Love Is All You Need

IMG_0426RoseMary is slipping away from us now. Dementia has taken sharp little bites of her, piece by piece, over the past five years.  In the last few weeks, her dignity has been mauled by this monster.  Oh, but she was a proud, proud woman. I see echoes of that again, now that the morphine has softened the raw, red edges of panic and confusion. She looks like she is asleep, deeply.

I fear dementia, like I fear cancer or terrorists. It creeps on stealthy feet. Sometimes there is a reprieve, and we think we have conquered “it” with some magic bullet of drugs or surgical strikes.  But dementia bides its time and exacts its due. Lurking. Robbing. Defacing.

IMG_0427For some time now, RoseMary could barely put a full sentence together….but she could still say her prayers. The Rosary was her solace, and the words to the Hail Mary came effortlessly.  As of last week, she could say only  “we” and “the kids” and “Marianne” and she could smile. Yesterday, her mouth moved but only jumbles and sighs came out.

Yesterday was December 15th.   RoseMary and I sat close together at a table in a hot, crowded room full of old, old people, most slumped in wheelchairs, all with bibs on, some talking to someone who wasn’t there and others comatose. One of our table-mates mumbled “agua” over and over, while the other stared vacantly into space, his body arched in stiff strictures. RoseMary’s once-coiffed hair is now pure white and stick straight. Her hands moved and twisted aimlessly, reaching, shifting.  I stroked her head, and we listened to a tinny rendition of “I’m Dreaming of a White Christmas” on the radio, while the Christmas tree lights on the small, plastic tree blinked off and on. The aide sat at the next table and checked her smartphone. I held RoseMary’s hand and whispered in her ear what she has told me all my life: you are very special to me, and I love you very much.

IMG_0430And then I told her that I thought people were waiting for her to come to them now: her husband Leo, her brother Bob, her sister MaryAnna, her Mother and Dad. That she had received her last sacraments and that I knew, if there was a God in heaven, that she would be welcomed there. She, who had been unfocused and agitated, turned her piercing blue eyes on me and nodded, once, slowly. I swear there was a ghost of a smile playing at the corners of her mouth.

At home yesterday, I sat at my sunny kitchen table, paying bills and waiting for kids to return from school – and I received a call from RoseMary’s nurse.  At about 3 pm, RoseMary began to struggle with labored breathing.  Morphine and oxygen were administered.

RoseMary’s body is no battlefield, and there are no more monsters lurking under the bed. One by one, her family and friends have come to hold her hand and to whisper in her ear, “you are loved.”  She is whole again.  Love is all she has ever needed, and all she needs now.IMG_0423

The (New And Improved) Harvard Art Museums

Harvard Art Museums, courtesy of their website

Harvard Art Museums, courtesy of their website

The new museums on the Harvard University campus in Cambridge, MA, are beautifully accessible in many ways.

IMG_3403Formerly in three separate museums, Harvard’s works of art are now collected in one recently renovated space called the Harvard Art Museums.  My subway trip took me an hour (just as the MBTA trip planner said it would).  The Harvard Square stop on the Red Line is accessible, as is the path through Harvard’s campus to get to the new museum.    Were you to drive in, beware that parking is costly.

For Cambridge residents, entrance to the museum is free.  It is free on Saturdays for Massachusetts residents from 10 am to noon.  An adult pays  $15 to get into the museum.

IMG_3450There is a small (um, rather expensive) cafe, Jenny’s Cafe, in the lobby with accessible seating in the courtyard.

IMG_3426I spent about two hours looking, perhaps, at the architecture as much as the works of art.  Three separate, historic, museums (the Fogg, the Busch-Reisinger, and the Sackler) have now been united with glass, steel and cedar.  The museums do have a wonderfully presented collection of early American portraits (my favorite is Joseph-Siffred Duplessis’ Benjamin Franklin, with his gorgeous, basset-hound eyes;  a close second being John Singleton Copley’s dignified old Yankee, Sarah Morecock Boylston).  The Busch-Reissner Museum (originally the “Germanic museum”) has a significant collection of German expressionism and materials related to the Bauhaus.  Don’t miss the lightbox gallery on the top floor, which has a digital play on the museum’s holdings.

Having poured over many and many a website looking for accessibility info, I have to give the Harvard Art Museums a giant shout-out for a truly “accessible” statement on accessibility on their website.  In general, I find their website masterful in that it is easy to navigate and it has succinct information.  You can also access the  on-line directory of the museum’s complete collections from the comfort of your own home, which might tide you over until you can get there in person.IMG_3389

NYC: Focus On Chelsea For Accessibility And Less Stress


The High Line Hotel, NYC

Central Park, the Top of the Rock, Times Square, Museum Mile, a Broadway show, St. Patrick’s Cathedral:  a quintessential New York City trip to some.   I offer you here an itinerary for a slightly less touristy – but no less iconic – NYC experience that is much friendlier to the slow walker or wheelchair user.

Consider booking a room at The High Line Hotel;  a fairly new hotel built on the site of the former dormitory for the General Theological Seminary in Chelsea, New York City.  The developers retained the feel of the Gothic Revival structure and to me, it’s just beautiful. The price can be right too, from the low $300’s per night (up to mid $500’s).



Intelligentsia runs a fantastic espresso bar in the lobby of the hotel with really, really nice baristas, and there’s plenty of indoor and outdoor seating (if you don’t mind rubbing shoulders with a preponderance of small dogs). The good news is that you too can bring your dog (even if it’s not a service dog) for a sleepover if you so desire. There are a few downsides:

– There is only one ADA room, and the back outside courtyard (which beckons invitingly, were it warm outside) is not accessible. (There is another courtyard with cafe tables in the front of the building, and this one is accessible.)

-The bed in our room was tucked into an alcove in the room, and there isn’t enough room for a transfer. I didn’t see the ADA room, but you’d want to make sure there is clearance around the bed.IMG_3617

– The lighting in the room is too dim, especially in the bathroom. The manager responded to my trip advisor review saying that the lights are on dimmers;  I knew that and still think the lighting is poor.  The bathroom sink area has very little counter space;  I’d check to find out what the ADA bathroom looks like.


Chelsea, NYC


The Morgan Library and Museum, NYC

Something I love about the Chelsea neighborhood:  the sidewalks in this part of midtown are wide, great for walkers and wheelchairs.  I walked for hours both in this neighborhood and then uptown to The Morgan Library and Museum (an accessible museum) on Madison Avenue, and every street I hit had clear curb cuts and pedestrian walk lights.  You could theoretically walk or roll as far as the theater district from here (but probably not much further unless you had many hours and good weather).

Need some other ideas to while away your weekend?  Let’s start with food:  Across the street from The High Line Hotel  is a great breakfast (and more) place, the Tenth Avenue Cookshop, which is nicely accessible from the street.  Wide aisles and good spacing between some tables, as well as an ADA bathroom.


Chelsea Market, NYC

Nearby is the Chelsea Market, a restored factory, chock-a-block with accessible stores and eateries. The biggest problem here is that some of the stores (the bookstore) and diners (Friedman’s) have squeezed too much into their space.  It’s also all a little precious, but I can be convinced to overlook that for a small price (like those free samples the Fat Witch Bakery doles out).   Droobing (a 3D photo booth) alone would be a reason to go to the Chelsea Market (and the Droob stall is accessible!) – that and some people-watching from tables scattered through the main area. It’s all indoors and there is a big public bathroom area (with an ADA stall).


Clement Clark Moore Park, NYC

And then you could walk or roll around for hours to work up your next appetite.  Right next door to our hotel, The High Line Hotel, is an accessible park, the Clement Clark Moore Park (he of “Twas The Night Before Christmas” fame);  the grounds of the seminary and the hotel once belonged to the Moore apple orchard estate.  Photos show a big swath of land and a grand country house;  hard to imagine that here, now, in the midst of the all the concrete, storefronts and traffic.  I hear that there is a reading of “Twas The Night Before Christmas” in the park on the last Sunday of Advent each year.


View from the High Line, NYC

The Hudson River Park is a great outdoor destination, with about 500 acres of space along the west side of Manhattan.  The piers in the Chelsea neighborhoods are all accessible according to this site.  Another place for views is along the High Line, a converted freight line that now serves as public space, runs overhead. See this map for accessible entrances to the High Line.  The park is 1.45 miles long and runs from Gansevoort Street in the Meatpacking District to West 34th Street.

The Hotel Chelsea, on West 23rd Street, is being renovated and will open in 2015.  Built around 1883, it’s a landmark and is on the National Register of Historic Places.  Dylan Thomas died here, Sid Vicious’ girlfriend was found stabbed to death here, and it’s been home to Bob Dylan, Iggy Pop, Patti Smith, Brendan Behan, Mark Twain and others.  This iconic hotel is worth a sidewalk viewing, at least it’s open to the public.

Since the mid 1990’s, many art galleries have re-located to Chelsea (many from Soho).  There are several performance venues (Irish Repertory Theater, Joyce Theater and The Kitchen), although, interestingly, none of these performance venues listed any kind of information for the wheelchair-user.  The Irish Repertory Theater is accessible but needs advance notice (call the box office) to put out a ramp at the front door.  The Kitchen is completely accessible. The Joyce Theater is also accessible.


Greenwich, NYC

History lovers take note: Chelsea features prominently in the Manhattan Project and WWII.  “In the early 1940s, tons of uranium for the Manhattan Project were stored in the Baker & Williams Warehouse at 513-519 West 20th St.  The uranium was removed and decontaminated only in the late 1980s or early 1990s…” (Wikipedia).  For more info on the development of the atomic bomb and uranium stored in Manhattan, see this New York Times article.

And do check out a copy from the library of Up In The Old Hotel by Joseph Mitchell, that veteran New Yorker, if you plan on staying midtown and venturing downtown.  Mitchell wrote for The New Yorker from 1938 to 1996, and his book chronicles (mainly eccentric) people in a place (on the margins) that is rapidly vanishing to gentrification.  His characters and the streets they frequent will inform your downtown trip for sure.


Downtown Manhattan