Speech from the MDA-ALS Gala “A Night at the Races” 2012

Thank you.

It is a pleasure for me to be invited back for a second year in a row. I want to speak to about my ALS and what your support has meant to furthering the work of the MDA.

I’d first like to thank all of you for your support and generous commitment to finding a cure for neuromuscular disease.

Some of you may have noticed there is something a little different about me.
Last year when I spoke at the Gala, I was standing.

This year I am not.

You might think this would be a setback to my goal of seeing my seven year old daughter graduate from high school.

But it isn’t.

If that was my only reason to keep going-to keep existing, then I would be missing the big picture. It is an important goal and a good reason to exist-but it is not the only one.

If I only concentrated on living one more year, I would have missed that year’s worth of important celebrations, birthdays, holidays.
I would have missed my older daughter’s first prom.

I would have missed the simple joy of going out to dinner.
Or having a dinner prepared for me by another family.

Or the scent of lilacs as they bloomed almost a month before they were supposed to because of the unusually warm winter we had.

The finality of ALS has taught me to appreciate the quality of my life as well as the distant goal I have set for me and my daughter.

In a similar way, the goal of the MDA to find a cure for neuromuscular disease is a distant one. It is an important one and a good reason to exist-but it is not the only one.

The MDA’s goal is also to provide for the more immediate needs of myself and the thousands of others that live with this illness.

They provide equipment, information, and access to exceptional care professionals.
They do it with ease and compassion.

They help me maintain an independent quality of life. By being a constant resource of care and support, the MDA has helped me to achieve both of my goals:
to live another year-and to have enjoyed living in it.

And so do you. Your generosity and financial support allows me to continue counting down the years as well as celebrate the special moments within them.

And for that I am so grateful.

Thank you.

Joy giving speech on stage

The World

The internet — or internets as some would say — is definitely a big part of making the world a smaller place. My day job certainly takes me to places and connects me to people from all over the world. All from my chair, of course!

I never thought I’d ever be doing anything on a computer. Back in high school — I wouldn’t even touch a computer. Thanks to RIT and my good friend Jeff, I learned how to use a Mac (thanks Jeff!). I’ve been smitten since. With the Mac, that is.

Anyhoo, I was going to be a famous photojournalist rock star or something like that in high school. I think that’s when the whole “world view” started to develop for me. I just remember these dance club parties (Pandora’s Box)  my friend Dawn & I would have in her basement. They were always of an International flair. I remember Tami and Keith came over. One time Laura and Natalie came too. Ah the 80s! We loved anything not American. We weren’t UN American we just liked to know more about the world than what we’d seen already. We enjoyed meeting the exchange students at school. We watched CBC and listened to Canadian music.

So I guess I was already of this World mindset even in my small town of Bliss, NY.

A few years ago, while working at WXXI, we had a guest come in for an event named Spencer Wells. An amazing GORGEOUS man, he was also super intelligent. He had done a show we were airing called The Journey of Man: A Genetic Odyssey. He’d also written a fascinating book of the same name which completely floored me. Basically, he was able pinpoint how all people of this planet were related by genes. Incredible! Learn more

So imagine my dismay when we are bombing other countries. Hello! Everyone is related! Quit it already.

Now we are at the social media part. The part that once again, bridges the gap between people in different cultures and backgrounds. I guess Michael Jackson was right — We are the World.

Practicing Non-attachment

Aside from living in the present moment, this is one of my BIGGEST challenges. How does one DO this? How do you stay grounded by releasing things, people, etc. ? I’m a photographer — I capture. That’s what I do! I was looking at my little girl tonight and trying to think about how to not be attached to her. Impossible! How can I let go this sweet thing I created?

My Little Fairy

My logic tells me that everything ends, as well as life itself, but I just can not apply that to my baby. I can make art and see it go. I’ve moved enough times to see my belongings go.

I’m reading No Self No Problem by Anam Thubten. I saw him lecture at the UU church last month. He was fantastic! I bought his book on the spot. It was kinda weird having a spiritual leader who was close to my age talk about Buddhism! I’m used to old guys who are “wise.” But he was great, down-to-earth, and seemed quite in touch with modern life despite being a month from a young age.

I just finished reading his chapter about non-attachment today. Logically, it all makes perfect sense. But emotionally, I feel like if I let go of someone, like my baby, I need to DETACH. And as far as I can tell, detachment is not the best way to parent your kids. On the other hand, I do practice this with our cats. They are indoor/outdoor cats. We live near a busy street in the burbs. I let them out knowing they may not come back, yet I do love my kitties and I take them to the vets, and buy them reflective collars. I will be sad if something does happen to them, for sure. The best I can do for non-attachment of my daughter is to have no attachment as to who or what she’ll be like. It started that way in the womb. It was more out of superstition — so that the baby would come out ok. All pregnant mothers must go through that. Anam calls it “inner contentment.” He writes that you give up nothing, just your attachment. Again, sounds simple. Not always so simple to do. Or maybe it is and it’s just not so easy to do. }:(

Meditation Walk

I went to a very peaceful and informative meditation retreat at the Unitarian Universalist church today. The  2 ladies were very sweet, and had perfect voices for meditation! They seemed so at peace when they talked about the Buddhist teachings. I thought I was out of my element, at first, but slowly they opened up and we found out that they are also still fighting their thoughts just like everyone else. I’d never had women teachers for this type of practice before.

One of the meditation styles they showed us was a walking mediation. I’m somewhat familiar with walking in silence from an all day retreat at the Zen Center. This was different. They asked us to walk around in silence for 10 minutes. We could walk in the room, out in the church or, as I did, out in the church garden.

What a lovely day! I admit it was hard not to think surrounded by the huge trees and still green foliage underneath. I decided that one of my next photographic projects was to come back and find some of those simple joys I’d seen on my walk. Hopefully, I can keep that little promise I made myself – and the garden.

Joy

Vipassana quotes

Joy. – The intense bliss, pervading the whole being, which follows on the assurance of salvation won, is independent of the dogmas or beliefs of those who have felt the disenchantment, passed through the struggle, and won the victory. We have undoubted and most interesting examples among the adherents of the most antagonistic forms of Christian belief. And Moslem Sufis and Buddhist Arahats have had the same experience. There are preserved in the canon two collections of the Songs of the Elders, ascribed respectively to one hundred and seven men and seventy-three women who became Arahats in the life-time of the Buddha. They are, with a very few exceptions, paeans of joy and victory. They have, unfortunately, not been translated as yet into English [Editor: several translations do now exist]; but the spirit they breathe is shown in the following prose passage. [Taken from my Dialogues of the Buddha, vol. i. p. 84.] After pointing out that the Hindrances (Nivarana) – sensuality, ill-will, torpor of mind or body, worry, and wavering – affect a man like debt, disease, imprisonment, slavery, and anxiety – it goes on:-

‘When these five Hindrances have been put away within him, he looks upon himself as freed from debt, rid of disease, out of jail, a free man, and secure. And gladness springs up within him on his realising that, and joy arises to him thus gladdened, and so rejoicing all his frame becomes at ease, and being thus at ease he is pervaded with a sense of peace, and in that peace his heart is stayed.’

“… Our deeds follow us from afar,
And what we have been makes us what we are.”

Fellowship with the Lovely

Thus have I heard. Once the Exalted One was staying among the Sakyans at Sakkara, a Sakyan township.

Then the venerable Ananda came to the Exalted One, saluted Him, and sat down at one side. So seated, the venerable Ananda said this:

‘The half of the holy life, Lord, it is the friendship with what is lovely, association with what is lovely, intimacy with what is lovely.’

‘Say not so, Ananda! Say not so, Ananda! It is the whole, not the half of the holy life. Of a brother so blessed with fellowship with what is lovely we may expect this, – that he will develop the Noble Eightfold Path, that he will make much of the Noble Eightfold Path.

And how, Ananda, does a brother so blessed develop and make much of the Noble Eightfold Path?

Herein, Ananda, he develops right view, which is based on detachment, on passionlessness, on cessation ; which is concerned with readiness for giving up. He develops right aim, which is so based and concerned : likewise right speech, right action, right living, right effort, right mindfulness, and right contemplation, which is based on detachment, on passionlessness, on cessation ; which is concerned with readiness for giving up.

That, Ananda, is how a brother blessed with friendship with what is lovely, association with what is lovely, intimacy with what is lovely, develops and makes much of the Noble Eightfold Path.

This is the Method, Ananda, by which you are to understand how the whole of this holy life consists in fellowship, association, intimacy with what is lovely. Truly, Ananda, beings liable to rebirth are liberated from rebirth ; beings liable to decay, liable to death, liable to grief, woe, lamentation, and despair are liberated therefrom because of my fellowship with what is lovely.

By the Method, Ananda, you are to understand that the whole of the holy life consists in fellowship with what is lovely, in association with what is lovely, in intimacy with what is lovely.’

(Excerpt from the Pali Canon: S.N. v. 2)

Back on the path to Enlightenment

Well… not really. After reading the Zen book, Sit Down and Shut Up: Punk Rock Commentaries on Buddha, God, Truth, Sex, Death, and Dogen’s Treasury of the Right Dharma Eye, I pretty much realized that there is no cosmic breakthrough. You just come to accept things the way they are. Everyone struggles so much to gain this or that, to be this or that… it’s so friggin’ exhausting! So, just like God — people are trying to look for something to take their pain away. Something else to strive for, to comfort them. There isn’t anyone or anything like that “out there.” It is all up to you — you and yourself — to drop all that crap you’ve piled up on yourself. (That reminds me of  The Junk Lady in Labyrinth — just piling all the old comfortable things on Sarah’s shoulders, just to hide form the truth of what she’d done.) I know, I know, this sounds so negative. But really, I’m not coming from a negative place. Life just is what it is. Trust me — I’m no devout Buddhist either. I’m interested in the dharma, but not dogma. I’m trying to get back to that place I was 5 or so years ago. That spiritual journey that many go on. I’m still looking, still learning.

Makeover shows

I love makeover shows. There. I’ve said it. Clean House, How Do I Look, What Not to Wear, among others. I love the fact that other people’s houses and closets, and wardrobes are waaay worse than mine! Actually, I probably like more about paring down your stuff than the schadenfreude. We don’t need so much stuff. I don’t need so much stuff in my life. If any of those hosts arrived at my house — I’d tell them — take it all! I’ve done it before. It’s amazing how much we can accumulate after a few years! I’m definitely, ready mentally, to pare down my clutter and re-make my life, I’m just not physically nor financially ready.

A book started it all

I was at a turning point in my life — unbeknownst to me. My mom & my Aunt Diane were reading these books about simplifying their lives. I was skeptical. I started reading SIMPLIFY YOUR LIFE: 100 WAYS TO SLOW DOWN AND ENJOY THE THINGS THAT REALLY MATTER and I really couldn’t put it down. Now that was nearly 12 years ago and things have significantly changed since then! I dumped my long time boyfriend, moved out, finished school. I’m now married to a great like-minded guy who doesn’t mind that I’m a nut. And we got kids and cats and a house. Even my career has changed. Change can really be made with some simple steps.

Hello world!

Live simply, simply live. It came to me one day while sitting in a hot tent on even hotter blacktop one July. My mom & I were selling my photographs at the Brockport Arts Festival and, well business was slow. Lots of people were walking by having already spent their cold hard cash on a stick with some fabric glued to it. I remember the old Italian guy a few booths over yelling “Cappuccino! Espresso!”