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.
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Wednesday, September 7, 2016
Followup on Views About Assisted Suicide and End of Summer
Subscribe to: Post Comments (Atom)
Post a Comment