Thank You, Nicholas Accorso, for My New Van

It was kismet that brought me to know Nicholas Accorso.

My husband & I had been looking off & on for a van months before our huge yard sale. It just happened one day he looked on the ESL Bank Swap Sheet:

Wheelchair accessible 2006 Grand Caravan $16,500. 44k mi. Start Date: 09/23/2011 End Date: 10/23/2011
2006 Dodge Grand Caravan. 44,000 miles. This is a lowered, Wheelchair accessible van. It can seat 6 including the Wheelchair passenger. New Air conditioning, new muffler and exhaust pipes. Tires one year old. The Wheelchair ramp is manual and is on the passenger side of the car. The mechanics and body are in good shape.

  

The price Mr. Accorso gave was more in our budget range than any other vans we’d come across!

Naturally, my husband was leaving for a week-long business trip, so we asked if they could hold it, till we could come see it. We sent a family friend to check it out and it seemed like a great fit! we still wanted to se it for ourselves.

Ironically, my husband & I always said we were NEVER going to buy a minivan, EVER. We were diehard Honda sedan fans. Ah… youth. Well, life changes in ways you’d never expect.

We met the Accorsos the next weekend. They were friendly and helpful, and really wanted to get rid of this van. Which we were really wanting to buy it! As we got to know them, it turns out they just lost their son to MD.

Nicholas Accorso was diagnosed with Muscular Dystrophy when he was 10 years old. He appeared on the MDA Telethon when he was about 11 and met Gabe Dalmuth for the first time. He passed away August 18th, 2011, 19 years old. Nicholas was a friendly, curious person who was adventurous and loved baseball. He also loved to travel. He explored the world right up to the end, traveling to South Dakota on his last family trip to use a Federal Parks Pass. Despite his condition, he was very accepting of his illness and did not let it get the best of him. He also had Autism, making his outward, social demeanor all that more special.

Here I am, back from near death myself (my embolism), the MDA Personal Achievement Recipient, and I am receiving the van that took this boy on his travels. All of us had shared some tears.

I know that Nicholas’ family misses him, but I am very grateful. I hope I can make many memories happen with my family in this van.

P.S. Thank you to everyone who helped me to raise money. It has helped us put a dent in the purchase. Now I can go places with my motorized wheelchair – I feel so free!

The world has gone crazy (or how governments get overthrown)

In my “day job” I’ve been spending a lot of time on Tweetdeck watching all our Twitter accounts. I should say that I’ve really just been watching the world revolutionize! Of course most of it is coming from NPR’s Andy Carvin! In the course of my workday, I’m seeing average people around the world using their phones – overthrowing regimes! Mixed in with tweets from The Onion, Duran Duran & Alyssa Milano, were these retweets from real people, talking about protesting to change their government. First it was Egypt, then Libya… Real humans talking about what is going on there at that very moment… Women & children being woken up in the wee hours with tear gas and rubber bullets!

Do these regimes not understand that this life is one of a global consciousness?

I’m terminal in the terminal

I have been traveling. Since I was diagnosed with ALS, I’ve been to NYC – twice, a “local” weekend retreat, and my big trip alone to Seattle and Portland.

What a hot day and night!

My mother-in-law Dot & me in the City!

They were all fabulous – and exhausting! I didn’t bring a camera for all of them. Sometimes it’s nice to just go experience travel and new places. Thankfully, I do have some cell phone pictures although they look like they were shot with a pinhole camera.

Joy on the deck of the Space Needle above Seattle, WA

Pike's Place Market in Seattle, WA

Joy Eats Voodoo doughnut in Portland, OR

Clearly, I had a great time. I admit, however, that I was terrified to travel by myself now that I am disabled or handicapped or whatever the damn term is. I kept stalling to get my tickets for Seattle because I just didn’t know how I would do it. For the most part people were watching out for me. It wasn’t always the airline staff. Chicago airport was not very speedy in getting me a wheelchair to my connecting flight on the way out and on the way back. The flight attendants were getting pissed off at these guys! I only had my walker broken on the way there but not on the way back. I still need to deal with the airlines for that. Apparently they charged me in Rochester a baggage fee when it should have been free!  Oh, and apparently if you take your handicap parking permit to Seattle, you can park anywhere for free! Is it like that everywhere? So much to learn! I was quite wiped out after all these trips so hopefully. I’ll be able to recover from the next one.

Checked off these from my Bucket List!

2. Visit my friend Michael on the West Coast.

10. Be a tourist in NYC. – I went to see a couple great plays on a hilarious road trip to NYC! And I finally saw the Statue of Liberty. She is awesome! Just an incredible architectural statue. Thanks, Dot for that gift!

Next up — December — Disney World!

Vacation

Vacation  all I ever wanted … so I just started to think about going on a vacation. I mean one WITHOUT children. It’s been forever since we went away. I’m even thinking about traveling overseas again. I so wish to see Italy, France, Greece and Spain. I want to eat and relax on a beach somewhere. Oh the food! The wine! The delicious desserts! Of course take some gorgeous photos, too. I would also love to just visit a tropical place like the Bahamas, Bermuda even Puerto Rico. Just sipping some delicious drink and lounging under an umbrella. Ahhh… maybe some day. I still need to get my health back and strengthen my legs for all that walking.

But for now, I can dream, and remember the travels I’ve taken already. Like Key West, Sedona, or my on the road collection.

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.