Mourning the End of Summer: Sand in My Shoes

 My late mom's favorite season was Autumn; unfortunately, I never shared that sentiment.  I have always had sand in my shoes.  I was born in Brooklyn, and both of my parents grew up on Coney Island.  I was taken to Coney Island in the summer to join my extended family -- mostly from my Dad's side [my maternal relatives are Austrian with fair skin and prone to sunburn] but sometimes we would be joined by my mom's Coppertone-slathering, umbrella-sheltered family.  Somewhere in my dad's house are black-and-white childhood photos of me in a one-piece on a beach blanket and home movies converted to a cassette[sadly VCR -- not yet put on DVD] of an iconic 50s me with white ice cream from a melting pop dripping down my face, and a confused "I can't lick fast enough; what am I gonna do?" look of total perplexion on my face.

Later, when we moved from Bensonhurst to Sheepshead Bay in Brooklyn, and my paternal grandparents moved to the Nostrand Projects right on the next block from the Sheepshead Houses [an adjoining NYCHA "project"], we frequented quieter Manhattan Beach.  Manhattan Beach wasn't in Manhattan; it was on the same strip of Atlantic Ocean as Coney Island to the east.  It was quieter and wasn't "bad" like Coney Island was starting to become.  "Bad" was another way of saying that there were increasing numbers of people of color -- African-Americans and Puerto Ricans [back then, anybody who spoke Spanish was Puerto Rican]. 

When I was 11, we moved to Long Beach, Long Island and my fate was sealed-- I would forever have sand in my shoes.  I studied for my end-of-year New York State Regents exams in the sun on a beach blanket.  My teenage years were filled with beach bonfires and all kinds of beach parties.  I told my mom I wanted to one day have a wedding on the beach with all the guests in flip-flops; she replied that I was a crazy hippie.  When I was deciding on a town in France to spend a summer studying and perfecting my French, it's no accident that I chose Boulogne-sur-Mer on the English Channel, where I attended classes in the morning and headed for the beach every afternoon.  My foray into living out of state was a four-year stint in Los Angeles, never far from a beach.

Lately, my beach stomping-grounds has become Rockaway, Queens, New York.  A once-bustling, then-crumbling stretch of the Atlantic which is part of the New York City beaches.  Rockaway is reachable by subway and MTA bus, and -- like all the city beaches-- free to visit.  An interesting thing happened after Superstorm Sandy; Rockaway experienced a revival of sorts, largely thanks to a huge contingent of young hipster artsy types from Brooklyn and Manhattan.  

                                                    My favorite Rockaway "poison" -- a Michelada which is a Modelo
                                                                Mexican beer with lime, clam juice and tomato juice in a glass rimmed
                                                                 with coarse salt and spices.  On the plate is ceviche [raw fish "cooked"
                                                     in lime] over a disc of quinoa




We accidentally discovered 97th Street after I read an article online about fish tacos being sold near the Rockaway boardwalk, and immediately was brought back to fish tacos I lunched on every day on a trip to Ixtapa, Mexico in the late 1990s.  I dragged my friend Louise one afternoon on a mission to Rockaway Tacos and discovered our new beach obsession.  That was late July, 2014 and we went back every weekend for the remainder of that summer.  And during Summer, 2015.  This 2016 summer, I was robbed of my July, dealing with my endoscopies and belly-hole issues when it was tough to leave the house.  The 97th Street boardwalk has become my second home, along with the Low Tide Bar and all the various food concessions that serve up everything from ceviche [fish cooked in lime] and pierogies to BBQ pulled pork and veggie juices.  And the most wonderful thing is the beach "mats" they lay down so that wheelchairs can go partially on the sand.  And I read [although sadly I don't have anyone willing and able to help me], that you can rent beach wheelchairs [with big wheels] that someone can push me in, on the actal sand and in the water.  Yes, I need someone young and/or strong who is willing to help me rent this and push me. 

I am dreaming of a permanent or even semi-permanent [summer] home/rental in the Rockaways.  I am determined to make something like that happen.  For right now, I am mourning the summer and trying to make my fall and winter productive enough to make some dreams come true for next year. In the meantime, let's hope for no broken bones, nor belly holes spouting stomach acid or half-digested food. 

Followup on Views About Assisted Suicide and End of Summer

So I posted the story on Facebook that I talked about in the last blog update. To recap: A woman with ALS threw a big [arty for 30-some-odd of her closest friends and then went through a doctor-assisted suicide [which was recently legalized in California].  Granted, she was a performance-artist and it's not clear from the article which abilities she had lost.  I'm sure if she lost use of her hands, she probably didn't see the use in going on.  I could count a hundred-and-one things I had to give up when I got this disease.  Anyway, it's a controversial issue among the disability community.  But I can't go into that.  But what I can attest to, are the commentas on my Facebook posting.  This is in an atmosphere of full-disclosure because everyone knew that I posted it, and they knew my situation.  Most people thought the woman in the article was brave to do what she did.  A very old friend of mine commented with food for thought: he said that good friends should be around the person with the disease all throughout, and not just show up to party with her to say thei goodbyes.  I agree with him, but on the other hand, at least they partied with her while she was still alive and not just show up to cry about how much they will miss her when she's gone.  Another old friend expressed in so many words that I was "brave" for going on and fighting, but she would have wanted to die.  In other words, I wa shocked at how many people basically feel that they would rather be dead than in my situation.  Which leaves me very grateful that -- despite all the pain I have been through -- I have managed to find joy in a world of ABILITIES, rather than buy into helplessness.  I know I have some people around me that have bought into my perceiveed in-abilities; the invitations don't come anymore and the attempts to socialize have all but disappeared except for a few exceptional people.  There are discomfiting looks when I mention traveling and sex, even though disabled people travel all the time, and even have sex.  I have re-connected with a gentleman from my past to whom I am extremely attracted; the looks on friends' faces when I mention this, show their awkwardness.  One friend said she didn't want me to "get hurt".  Was she so concerned when I was able-bodied?  If anything, I am so much stronger emotionally than I ever was in my former life.  Another friend says she "censors" her talk because she doesn't want me to hear about anything happy in her lefe; other friends tell me that they don't want to tell me about thir probems, so as not to "burden" me.  This last subject was another way to see how other peoples' minds work, and I must say I am sad for them and I hope they never have to deal with half of what I do.  I realize how many people around me are weak and even ignorant.  Society has to do a better job of preparing people to deal with people like me,  Just sayin' 'Nuff said.

Anyway, the end of summer has set in, even though I will continue to go to Rockaway Beach as many weekend days as possible through September.  We don't even have to go into the water, or even on the sand; we just bring reading material.  Our base has become Beach 97th Street on the newly-rebuilt boardwalk.  Rockaway took quite a hit in Superstorm Sand, as did my hometown of Long Beach.  Both towns have rebuilt their boardwalks, which were destroyed.  Long Beach's boardwalk was reconstructed by funds raised largely by hometown boy Billy Crystal [the comedian/actor -- he was a baseball star at my school who graduated the year before I entered high school -- his older brother Joel was my middle-school art teacher]  Rockaway is a New York City beach.  For those of you who have never been to New York City, we have beautiful city beaches along the Atlantic Ocean, and they are all free. These boardwalks are more like cement-walks now -- the old wooden boards are replaced by more sturdy material that will be better able to withstand bad storms.  In the Long Beach Library, I was always mesmerriaed by photos of the old boardwalk constuction in the early 20th eentury, especially the pre-PETA photos of the use of elephants to transport the heave wood boards.

Rockaway has gone through a resurgence of sorts.  Once a burgeoning vacation community in the late 19th century and early-to-mid-1900s, it fell into ruin and decay by the late 1960s.  Rockaway Playland Amusement Park closed in the 1970s and the ummer bungalowa were rented out year-round to very poor families.  Most of the other families were blue-collar workers of Irish descent; in fact, Rockaway families suffered many lossses during the 9/11 attacks because there was suck a large concenetration of police and firefighter first responders.

 In the top photo, you can see ceviche [raw fish "cooked" ibn lime] on a disk of quinoa with seasonings.  Very delicious and healthy.  In the cup is a drink called "Michelada".   This is a popular drink at Mexican resorts.  They rim the cup with sea-salt and hot pepper and pour in tomato and clam juice.  They then pour in about 1/2 a can of Modelo beer and you just keep pouring in the rest of the beer as you drink down.  It's delicious and refreshing and also has plenty of ice.  It's kind of like a beer version of a Bloody Mary.

I am not clear about when Roclaway suddenly became cool and hip, but I suspect that Superstorm Sandy had something to do with it.  One summer afternoon last July, Louise and i saw an article online about a place specializing in fish tacos and decided to check it out.  For some reason, that part of the boardwalk was intact so we wandered on.  Once on the boardwalk, we discovered an additional structure of food outlets and they were serving up cuisine beyone hotdogs and burgers and fries.  There was a juice bar, several outlets serving up cevicjhe [fish cooked in lime -- Latinos' answer to sushi], BBQ and other delicacies.  The people hanging out there seemed to be young hipsters and their babies.  There was an eclectic blend of music playing and we felt very much at home.  It was already the end of July and we made a point of going there every Saturday through to the end of September.  I havd always had sand in my shoes and live for Summer.  Rockaway has become my second home in the summer.  I'm a sucker for the salt air and the sound of crashing waves,  I've had many kisses on the beach; it is the stuff of all my dreams.  I always dreamed of getting married on the beach, nd refuse to let go of that dream.  I see a lot of raised eyebrows and hear a lot of tooth-sucking in pity.  Nobody wants to see me "get hurt".  I can still fall in love and I can even have sex, although my partner would have to be patient with helping me move my body into position.  I'm not ready for assisted suicide as long as there are beaches.

Update August 30, 2010-- Bye-Bye Summer

Well summer is at an end.  I am grateful for the three outings I had this summer, which was really a hot one.  At the beginning of the summer, Louise invited me to the annual barbecue at her church, St. Luke's, in Forest Hills, on a beautiful summer evening.  In July, Judy came out and we took Access-a-Ride to the Rockaway boardwalk. It was pretty empty on a Tuesday, and Rockaway is still very depressed, with a lot of boarded-up businesses right next to the beach on Beach 116th Street.  It reminded me of my home town -- Long Beach -- before it got the HUD grant which facilitated its revival.  There was an SRO right off the beach and therefore some shady characters on the boardwalk.  Originally, we were going to go to Brighton and have lunch in one of the Russian restaurants on that boardwalk, but I thought it would be too far, and there is a city bus from Rockaway to my neighborhood in case we had any trouble with Access-a-Ride. But Access-a-Ride was impeccably on time, and I'd forgotten what a long ride it was from my house to Rockaway, along Cross Bay Blvd and through a long stretch of nature preserve.  I wish I had gone with Judy's original suggestion of Brighton, which would have taken the same amount of time over parkway.   Oh well. But it was hot and the sun was out, and I knew it would be my only opportunity to see the ocean this year, so I was grateful to be there. And Judy is great for having gone with me.

My third and last outing this summer was in mid-August. Jenny Vidoni, who works at MDA in Manhattan and coordinates the MDA/ALS efforts in NYC, came out to visit.  I know Jenny from our support group at All Souls Church, which she co-facilitates.  I was just so grateful that she came out because Manhattanites hate to come to the outer boroughs.  We walked to Flushing Meadows Park, and visited the Zoo.  We had a great day.  Jenny is used to dealing with all kinds of disabilities, so it was fun, and extremely comfortable.

I was invited to be part of the Consumer Board of Concepts of Independence, Inc.  Concepts is the company that runs my Consumer Directed Personal Assistant Program [CD-PAP]  This is something that disabilities advocates fought for, along with the Americans with Disabilities Act.  The CD-PAP allows me to remain in my home and select my own aides [personal assistants], rather than depend on an agency.  Those of you readers who have been following me since the Caring Bridge page I had, know what a triumph it was when I got onto the Concepts program.  The agency I worked with before, through which I met 3 of the aides I have now,  was less than accommodating, sending all kinds of aides to me who were less than satisfactory.  I was robbed of a brand-new digital camera, and plenty of cash.  Some of them were so scary, I was afraid to go to sleep at night.  Eventually, I got a team of aides whom I could trust.  But when any of them called sick, the agency sent strange aides instead of ones I already knew.  It's very difficult to keep training strangers about what to do, especially since I can't speak.  And some of them were intimidated, frightened, or just plain lazy.  I had an assortment of ladies who I am sure were nice people, but they resented being sent to such a "difficult case" and took their perceived misfortune out on me, or just fell asleep, snoring, in my big comfortable chair.  My complaints fell on deaf ears, with the agency supervisor often telling me "I have a hard time finding aides who will go to you at all".  That didn't make me feel very good, and to top it off, I had a nurse who would come once a week and tell me "I have a hard time finding an agency who will take your case on a long-term basis, because your case is so difficult", which made me feel even worse. The day I switched to Concepts was a happy day.