Two Trips Out of the Apartment for Vinny
Monday, January 27, 2003
Vinny was filmed today by a TV crew at Howard Grossman’s office for a bit about medical marijuana for MPP.org and maybe a PBS thing too. Vinny’s amazing. He can reach down and summoning the will power to pull it together and he looked and sounded great. And it got out of the house with help from me and Nicole, his wonderful 8-hours-per-day home health care aide (I don’t know how either of us would get along without her). Now he’s fast asleep on oxygen and out of it for the day (or two). But he looked like a movie star when the camera was on — it really is amazing that he can still do that. They will let me know about air dates, etc.
When we were at Howard’s office (Vinny doesn’t have doctor’s appointments anymore — one nice plus with hospice care) we saw in the office a new work by Barton Benes — a large reliquary with two notable (to use) compartments. One with a rubber band used on one of Vinny’s twelve endoscopic banding procedures and retrieved when it passed (we were worried at the time that it wasn’t normal to find blue rubber things in one stool), the other with dose of Serostim, which I estimated at costing $96,000 per year. A third section had Kevin O’Leary’s band aide from his first (negative) HIV test. Lots of other familiar names in the other boxes too.
The dog book kind of made me sad, as Vinny spent the summer and fall saying he had to get well enough to get a puppy for Christmas, and instead on his few good days he goes for a walk with his hospice nurse to the corner pet store to look at the puppies in the window, but a dog is just out of the question for now.
I decided that we needed some nice weather NOW, so I took Vinny and the Wonderful Nicole by Taxi to the [http://www.metmuseum.org/ Metropolitan Museum] to have a nice long walk in the various sunny, warm, wind-free courtyards. Nothing to do with looking at art, just enjoying the indoor weather and serenity. We got a cab right off, but just the trip in the taxi was too much — but he so wanted to be going out, so we went anyway. From taxi to wheelchair, and wheeled though the Temple of Dendur [http://www.metmuseum.org/Collections/search-the-collections/100004628], through the American Wing, stopping off at another men’s room, into the cafe for half a sandwich, rolling on thought the Islamic wing, detouring via the Chinese Astor Court, and after one more stop at the men’s room, Vinny couldn’t stay awake for too much of it and was even too tired to really appreciate being out of the house. After two hours and $100 later, we got from taxi to wheelchair back to taxi and got him manhandled back into being on oxygen. And it took a couple of days to recover from having such a wild time.
The nurse left at the end of the day, and was a long night here. I first stopped off to the video store to have something fun to watch while I’m on-duty. Gregory will keep an eye on Vinny while I’m out and maybe I’ll have a bubble bath before he’s leaves for a bit. But I’m pretty tired myself, so there’s not to much in store for my night. Vinny was insistent that he wanted peas and carrots with his oatmeal for dinner, but hopefully he’ll forget about that and I can sneak him either apple-cinnamon-raisin oatmeal (my home-cooked specialty) or pureed vegetable soup with peas and carrots…
REMEMBER to visit Vinny’s website
http://www.metamorphics.com/vinny/ [http://www.MarkdeSollaPrice.com/vinny/] for the latest news, pictures, and goings on.
Sorry to say that we *STILL* have haven’t had any time to sit down and thank so many of you personally (as I want to do really soon and plan to on Tuesday) for generously clicking through to Vinny’s website
http://www.metamorphics.com/vinny/ [http://www.MarkdeSollaPrice.com/vinny/] or send an old-fashioned check to us to help out with all the expenses. It’s made Vinny and I feel very loved by our community, not to mention able to keep the phone and lights on, pay the new calendar year deductibles, and keep us all fed.
We’d like to thank, in addition to our terrific biological families, Nicole (our 8-hours-per-day home health aide) and Gregory Dean who’s been invaluable:
Since last e-mail, in chronological order we’d like to thank: Susan Hays, Don & Ondree Israel / Benefit Concepts Systems, Andrew Kirtzman (again!), Rod Renfrew, Krista Gromalski, Matthew Levine, William Epperson, Ava Lev, Josephine Johnson, Judy Lobis, Alec Bentley, Andrea Levy, Howard Grossman / Polari Medical Group.
And of course the folks we thanked last time who helped get us this far: Andrew Kirtzman, Sean Strub, Larry Kramer, David Barton, Henry Scott, Andrew Tobias, Dick Scanlan, Trey Speegle, Corey Zucker, Suzanne Golden, Don Israel, Jeff Hoover, POZ Magazine/ Smart + Strong, Susan Hays, Cathy Parsons, Laura Hannon, Michael Workstel, John Catlett, Joan Turner, Martha Bellieveau, Mary Curtin, Cathy Parsons, and our Aunt Joan & Uncle Norman Cravitz from England who just celebrated their golden wedding together!
What a great bunch of folks we know — and some we don’t know too well, but who are friends of Sean’s (again, thanks Sean!). I don’t know what we would have done without all this help. It’s been such a long battle, and emergency last-ditch reserves (both financially and emotionally) have been used up long ago.
I feel a little greedy asking, but I don’t know how we’d make it through all this without your calls, notes, cards, e-mails, hugs, flowers, prayers, helping with errands and of course, those financial PayPal donations (click here ) and old-fashioned checks payable to “Metamorphics Corporation” It’s made a LOT of difference to not just getting by, but the level of comfort that we could give Vinny.
Since Vinny rarely gets out, YOUR HOUSE VISITS ARE WONDERFUL — those of you who have coming over for a few hours to the house with all sorts of creative gifts to cheer Vinny along — you have really given something very special to both Vinny and I, and I would strongly encourage visiting us here, if it’s something you’d like to do. Thank you!
Love, Mark and Vinny