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Music of a Life


Teenage girl in flowered skirt

Feathered hair and feather earrings;

Ahead of her time.

No one knows that of course,

She is just weird.

Not a hippie, not a greaser.

Not into the Dead.

Just finding her way through.

Beatles as a kid, and lots of cool things.

First the Monkees, then Joni, and John Prine. Linda and Emmylou too.

Bay City Rollers? Really?

Okay, it makes her happy.

Mostly as a rebellion against her Deadhead siblings.

Changes in the mind and thoughts and body:

A hard rock stage, a new wave stage

Bowie, Ramones, Joe Jackson, the other Elvis, Patti Smith

Changes in the family dynamic: ALS

Her mother is dying.

She cannot stay to watch.

When twenty-one arrives, she goes

Life as an experiment in California.

Drum circles and lots of Bonnie: Raitt and Bramlett.

Roseanne and Johnny sneak in with Neil

Because it is the Mountains of Big Sur

A melting pot of transplanted Northern and Southern Easterners.

Musical influences like frenetic foggy air infused with electricity

Bouncing off the peaks and back to earth

To the conglomeration of dream seekers and dropouts

Dancing on the edge, so high over the mist

Dancing so high all the time

Deciding at last to come down off the mountains, to come down

And head to the small town of Cambria

Where 3,000 people live everyday lives

While Big Sur transients wander in and out.

Good folks, many descendants of Swiss farmers who migrated there

Many still farmers, simple and opinionated, but kind.

She finds her way to Camozzi’s Saloon,

And makes a home there

In the little apartment above

And works and plays and exists in the bar.

Her friends are musicians and DJs

And everyone there

Except those who don’t like her

Because she is ahead of her time

And tragically forever from New Jersey.

Bands play each weekend.

The scene is life itself

For all who sway together

To the beat of the new sounds

Billy Idol, Greg Kihn, Huey Lewis, Eddy Grant

Donald Fagin on the beach and late night drives.

The mornings are waiting periods for the nights.

Add cooking as a second job,

Telephone Operator for an answering service as a third.

But that is a cool job; hell, it’s all cool.

It’s Cambria, and Joni has nothing on her with Morgantown.

Walking through the pines in the eucalyptus air,

Singing out loud

No one cares

Because they are singing out loud too.

The Christians slightly push for attendance

By being very welcoming and having lovely tunes.

She walks by their churches on Sunday mornings

And for a time, her songs change to theirs.

It’s peaceful and laid back being a West Coast Christian

They eat brunch at the Moonstone in San Simeon

After they build up the Holy Spirit during service.

Soon though, she turns away from their endorphin highs

And returns to the bar and the bands

And the sweaty dancing nights.

The rockers eat brunch in town en masse

They are hungover

But champagne with strawberries makes them feel better about

Who they are

And she is one of them

She has always been one of them.

Wrong turns keep bringing her back to Jersey

To the life she never wanted to live

Running running running back to the West

Bouncing back and forth across the country for years

Between happy poverty and comforting sadness

Until her father dies

And she doesn’t bounce anymore

But becomes resigned to her East Coast fate.

Her travels have yielded a bastard

A son who calls himself a bastard and laughs

He is dragged into and through it all.

After many drugged and drunken stupors

And abusive men

She sends the boy away

Crying;

She must save him from her life.

A frantic foggy mind that cannot find its way back

And fears it all may dissolve

Lost child and childhood.

But when the fog lifts

She finds her sobriety

And keeps it.

A new start to her old life.

She is no longer weary and heavy laden

And doesn’t need that scripture to find comfort

The comfort is within herself.

The inside girl returns

And she realizes she has always been there

Waiting and singing.

 


When the kids were little, their Uncle Joey was the manager of the Red Carpet Inn on Route 17. We used to go there almost every summer day to use the pool. It was a pool at a motel, so it wasn’t like we were living the high life, but it was pool, and that was a lot. Our town didn’t have a pool, and we couldn’t drive to the beach all the time. So it worked great for us.

Joan and I were in business school together. When I met her, I thought that she couldn’t be that smart, because she had such a street attitude. I thought, mistakenly, that people could only be street smart, or book smart, not both. Joan proved to be the only person in our class besides myself who received all ‘A’s. We were both on the President’s List every term. And we found that we got along well, and enjoyed each other’s company. Soon we were talking on the phone, visiting each’s others homes, and going places together.

One day, I invited Joan to the motel pool, and she accepted. She was supposed to meet us there at 10:00 am, but we waited for a couple of hours until she showed with her two kids, and one extra. She seemed out of breath and out of sorts, and began apologizing for the extra head. “I’m sorry, I had to take him.  He’s my neighbor. His parents had a fight, and he came to me. I just couldn’t leave him there. He won’t be a problem.”

Joan’s kids stripped off their cover ups and jumped in the pool with my children. The boy, who was about twelve years old, was sitting next to Joan while she prattled on about his parent’s bad parenting skills and shambles of a household. My heart broke a little for him.

He squirmed uncomfortably, then asked, “Can I go in the pool, too?” She scolded him. “No, you don’t have a bathing suit”, then turned to me, “He doesn’t own a bathing suit.” He was in a tee shirt and cut-off jean shorts. My heart broke a little more. “Of course he can”, I said. “He can go in in cut-offs. It’s fine.” He jumped in, and held onto the side.

The other children came over happily and welcomed another playmate to the water. They could stand in the water on the shallow side, and he soon joined them in their rollicking fun. They had water toys and smiles and laughter. The sun was shining. I was chatting with Joan about non-important things while we soaked up the rays. The boy waddled through the pool to the side,  grabbed the edge and looked up at us with shimmering eyes and a wide smile. “This is the best time I’ve ever had!”, he announced. My heart filled with joy and sorrow simultaneously for this child. I was so happy to give him a wonderful day, but so sad that THIS was ‘the best time’ that he ever had. Playing in a motel pool on the side of Route 17. I think it was his first time in a pool. At twelve.

I never saw the boy again. I don’t remember if I even ever asked Joan about him. After we graduated, Joan and I stayed friends for a while, but then our different lives let us down different paths, and as so often happens, we lost touch. I tried to find her a few times, but the most I could find online was that one of her children passed away. I was never able to reconnect.

But, I think of this boy often. I think of how lucky my kids were for a while, how lucky so many of our kids were, even though they and we didn’t know it at the time. I think of how for a brief moment, I wanted to pick this kid up and take him home. Then I lost my own way, and only wanted to make things right for me and mine. Now that I am back, I want to help that boy again…and all those boys and girls who think a day in a pool in a motel on a highway is the best time they ever had.

Christmas is for Giving


I was the second to last child, and always begging for attention. “Mommy, watch this”, “Mommy, listen to my song”, “Mommy, listen to my story”. But Mommy was always busy with her work, with her church, and theater, and politics, and all the other children. Mommy never had time to listen to my stories and songs. She never had time to watch. She never had time to answer questions, or didn’t know the answers, so pretended the questions weren’t important.

Daddy was there, but he wasn’t. And I never felt like he cared that much, at least when I was little. Mommy was out a lot at night at rehearsals and church functions and political meetings. When she wasn’t home, I felt so uneasy. I thought that if someone broke in the house, Daddy wouldn’t care enough to protect me. I needed her there. She would save me.

Much later, I finally realized that Daddy’s way of loving was to go to work and buy what we needed, and what we wanted. For a family of twelve, we were very lucky. They were thrifty, for sure. But they made sure each of their children had a childhood.

We went on vacation to a large Victorian in Cape May for the entire month of August. Daddy came the first two weekends, taking public transportation to Atlantic City, where Mommy would pick him up and bring him back on Sunday nights. He stayed at home during the week, but those weekends were nice with our Dad. He couldn’t totally relax. He did a little though, and you could tell he needed it. The last two weeks he vacationed with us. He was so much fun then! He was the Dad I always wanted him to be. The one I dreamed he would be every day! The Vacation Dad! Approachable, impulsive, smiling.  I miss that Vacation Dad.

I got new clothes three times a year; when heading Back to School, on my birthday (which conveniently is in May, so my mother could get me summer clothes and call them my presents), and for Christmas. Christmas brought garbage bags filled with clothes. It was wonderful and we always did a fashion show for each other. We would also get one or two other presents besides that.

When I was nine and the youngest, Karen, was seven, we both got hot curlers that were made for children. They made a lot dangerous children’s toys when we were little, like Chemistry Sets and Power Tools for kids. One year we got a popcorn popper to share. We’d load it up with kernels and oil, wait for the popping to begin, then use the lid to aim scorching hot kernels at each other. It really hurt when they made contact. Then, yeah, yeah, we ate the popcorn that was still in the popper. But the most fun was the act that could have maimed us severely.

In 1967 I was seven, and Christmas was approaching, Kathy from down the street told me that Santa wasn’t real. She had just moved to our block.  She was different from the kids at school; like she was much older than me, but she wasn’t. She was the coolest kid I had ever seen. I had no reason to doubt the validity of her declaration, but needed proof.

On Christmas Eve, our parents went to Midnight Mass as always, and we went to bed and waited for Santa. I got Karen up when I heard their car drive pull in the driveway and we looked outside. “Kathy said that Santa is Mommy and Daddy”, I told Karen, but I wasn’t too sure about it, and my five-year-old sister did not believe it. So, we poked our heads over the windowsill and watched our parents get out of the car. They walked to the trunk, and took out a bunch of garbage bags that were stuffed in there. They both slung them over their shoulders and carried them up the driveway to the front of the house. We watched them walk until we couldn’t see them anymore, then ran for bed and got under the covers, so they wouldn’t know that we knew about the bags, and that the man in the red suit was a fairy tale. Karen was crying; I had devastated her. I was worried that Mommy would hear her and come up, but she and Daddy were too busy setting up our Merry Christmas surprises. I didn’t know why it bothered Karen so much; I wasn’t that phased by the revelation. Were seven-year-olds so much more mature than five-year-olds? Or had I been suspecting for a while, anyway?

I was a very nosy child. I wanted to be a spy like Emma Peel or a detective like Honey West when I grew up, so I tended to snoop in my parent’s things. I was practicing! Having gleaned this information from my spying made me feel a little smug. And I was fine with it. The creepy tiny old guy whose stomach shook like a bowl full of jelly was not sliding down our chimney while we were sleeping. It was just my parents. And presents. The presents were still there, and they were the important thing!

But we didn’t just love the presents we got, we loved the presents we gave, too. We had a present allowance to buy presents at Sears when we were very young. “We got you paints’ was a line that was often used as a joke about not being able to keep a Christmas secret. We all laughed about it as if it was a shared memory, but I didn’t remember it. Apparently, one of my brothers told another what they had bought for him while they were still in the Sear’s store, “We got you paints.”   A few years later, our Mom started taking us younger kids and Kathy from down the street to the Job Lot in New York. Mommy loved the Job Lot. It was one of the first of the deep discount stores. Among so many other gifts, I remember buying a lot of Yardley Soap products there, and Aziza make-up. Make-up for me, because I wanted to be a grown-up forever (until I was one), and Yardley Lavender Soap for Daddy. He always used it. Yardley began making Lavender soap in the 17th century, which was way before Daddy was born, so I assume he had always used it.

When we were ten, Kathy and I decided to buy each other boxes of chocolates while in New York. We got them cheap, and got cheap presents for everyone in our families too, using the money that our Moms had given us, along with babysitting money. When we got home, we wrapped our boxes of candy, put each other’s names on our gifts, and put them under my parent’s tree. Then we went to Kathy’s house and watched the premiere of “Santa Claus is Coming to Town”. We pretended to each other that we were too old for such baby shows, but secretly I loved it. I bet she did, too.

I got home two hours later, to find our presents were opened and eaten by an Irish Wolfhound. Our Irish Wolfhound. There was slobbery wrapping paper and candy cup liners everywhere. You would think after years of living in the same house that a girl of ten would know her dog had a penchant for Christmas candy. Well, all candy. Well, all food. WELL, everything he thought might be edible.

Some years were better than others in our lives, but no matter how much money we had, every Christmas was lovely. In the early years, my parents had big family parties with about 100 relatives and friends, and the adults would all drink and tell stories and sing carols and laugh and sometimes cry. It seemed like most adults smoked back then, and a barroom fog would fill the first floor while these parties carried on. Our parents didn’t smoke, but in the ‘60s so many did, and second-hand smoke was not a thing.

One such party, we had a piñata right in our hallway. There was a wooden bat that we children were supposed to swing at the piñata with. A wooden bat. In a house with 100 people. That was the ‘60s. We swung and swung that heavy bat, but every child missed every time. The adults took over; they were impaired and had a hard time of it also. Then came Mr. Regan’s turn. Mr. Regan was my hero. What a wonderful man. What a character! What a drunk! He began swinging wildly and everyone had to run out of the way. He gave it a huge whack, and all the candy went flying, but we had to wait a minute for him to stop swinging to run and grab it all up.

When we were older and Mommy had passed away from ALS, my father continued Christmas in in similar fashion. One year when Karen was in college, she filmed a Christmas morning, and inquired what each of us thought Christmas was all about. She came up on Daddy making coffee, and asked, “What is Christmas all about?” He spun around and shouted, “GIVING! Christmas is about giving.” Christmas was when Daddy was his very, very best. I miss my Christmas Daddy most.


I was going through “On This Day” on Facebook, and came across this private note to some friends seven years ago. I am not sure if I ever shared this story with you (this blog is getting to be the online version of spending time with your old Aunt, I think. I tell a story, you roll your eyes and sigh, “Yes Auntie, we know. You’ve told us.” If this is the case with this story, then just ignore me and go get us some drinks. I’ll have a Presbyterian.). If you haven’t heard the story of my Dad’s wake and funeral before, I hope you will stay for a few minutes and indulge me in my memories.

Tom was really down. He was not dealing well with his father’s passing. He felt his friends were giving him too much room, and he wished someone would talk to him, help him get out of his funk. I sent him this e-mail. I thought it was going to help, I hoped it was going to help him to smile a little. He wrote back. It did. Here is what I wrote:

“How can your dad’s wake and funeral make you smile, you say? Well, it makes me smile and sometimes laugh, every time I think about them.

My dad was the epitome of the cranky old man, and he didn’t like noisy children (except my son Zach, who could do no wrong in my dad’s eyes). Daddy passed away on March 7, 1994 in St. Barnabas Hospital in Livingston, NJ. I was holding his hand as he went, so I knew he was gone, but I still couldn’t believe it. I just couldn’t wrap my mind around my dad not being there. I was 34 years old when he died. That was a long time to have his constant presence…how could he be gone now? So, even at his wake, I just couldn’t grasp the reality. Until I realized, with all these people and children in the room, there was no way my dad would be sleeping soundly. When he didn’t get up and say, “You damn kids keep it down!” I finally accepted his passing.

Then we were at his funeral. My oldest brother wrote and read the Eulogy. My parents were very giving people, but they had 10 children to support. They had to be clever in order to share the wealth. So they did things to cut corners. And my brother incorporated this into his Eulogy. He talked about how Daddy could take rotten peaches and make the best ice cream and milkshakes, and rotten tomatoes and make the best stew. But, when he said, “Moldy ham…” in a church full of people, many of whom I didn’t know, well that just broke me up…into giggles! I was struck by the perversity of it! I was trying as hard as I could to suppress them. I didn’t want to appear the insolent child. At the exact same moment, the priest came by sprinkling incense on those congregated, and directly on my oldest sister, who was seated next to me. Unfortunately, she is allergic to the incense, and she started trying to muffle sneezes, so as not to make too much noise.

There we were, seated together, and both making sniffing, choking noises. I was so embarrassed, until people started patting me on the back, and saying, “It will be alright”, and I realized they thought we were crying! This made me laugh more, again at the perversity of it all, and it just sounded like I was crying louder. Of course, the thought of my Dad watching me threw a little fear into me. Daddy would have said, “Dammit, stop that laughing!”, and somehow, that made me laugh, too.

Of course, I miss my Dad more as time goes by, but I also think those incidents were really a gift, a way of laughing with my Dad.

I love you, Tom. I hope you have your precious memories to make you smile through this.

Meggie”

 


I always knew Mommy as working in the Children’s Room at The South Orange Public Library. I don’t think she was working there when I was a baby, but I cannot remember a time when the library didn’t figure greatly in our lives. She was there when I was very little, and she was my Library School teacher in the old library, in the Connett Building.

What I remember from Library school is that we were very good children, and sat quietly and listened to my mother’s animated readings of the incredible stories that were out at that time. As a grandmother, I am sure that 3 and 4-year olds were far from very good, but I do know that at least most of us loved being read to, especially by someone like my mother who could turn a book reading into a one woman show. Some of my favorite children’s books were ones that she read, such as “And Rain Makes Applesauce”. I have the discarded library copy on my bookshelf; very probably the exact one that she read to us.

When the new library opened next door to the Connett Building, Mrs. Mary E. Vorwerk was hired as the Children’s Librarian…my mother’s boss. There was always a Halloween party in the room off of the Children’s Room, where my mother and Mrs. Vorwerk read to us. That is where I heard “Old Black Witch”, another book that I still love. There would be a mini-parade in the room, and prizes, and snacks.

In the summer the library had Reading Challenges. You would keep track of how many books you read on your chart in the library. Kids nowadays have Summer Reading to complete before they return to school. Schools didn’t give Summer assignments when I was a kid, but the library picked up the slack.

I remember the first time I ever won something, it was a jellybean contest at the library…how many jellybeans in the jar? I won a book of riddles. I loved that book, mostly because I won it. I told a lot of bad jokes to my family for a while, until the jokes were all told out.

Mommy worked at the library throughout my childhood and teenage years. When I was about 11, I started going upstairs for some books, and downstairs for some. Mommy and Mrs. Vorwerk continued with Library School and helping children learn to love to read. I still meet people today who tell me that my mother instilled in them the love of reading, and even some who say she nurtured their dreams through learning when they were children. A librarian is another important member of the village that helps your children to grow strong and wise.

The library seems to have always worked with the South Orange Historical Society, as they do with the South Orange Historical and Preservation Society now, and Mommy was there:

“Mary Vorwerk, of our library, volunteered to wear a Revolutionary costume as she watched over the exhibit and memorabilia. Elaine Marlowe volunteered her 10 children to man the postcard booths”

In 1980, I was 20 years old, and my Mom was still working in the Children’s Room. She started having a sore and hoarse throat, but just thought it would go away in a while. She waited for a month, and her throat and the hoarseness didn’t get better. So, she finally went to the doctor’s. After many tests, the answer came back. It was not a sore throat…it was ALS.

She continued to work in the library and the children continued to love her. She lost her voice, and it seemed she would not be able to work in the library anymore. But, children of the library held a benefit to raise money to buy a newly designed computer for my mother to use at the library. She could type into the computer, and it would speak for her! This was quite a miracle in 1981, and it meant she could continue working with the kids, whom she loved so well, and who loved her as much or more. Her computer had the same voice as Steven Hawking, and whenever I hear him use his synthesizer, I can still hear my Mom.

“Elaine Marlowe, who lost her speech because of amyotrophic lateral sclerosis, continues her work as a children’s librarian, using a computer to tell stories complete with music, sound effects, different voices and even graphics. According to Ms. Marlowe, “If children can relate to ‘Star Wars’ and computers, they certainly can relate to their librarian talking through a speech synthesizer.””

http://tinyurl.com/zva5egd (posted 11/18/84. They were late. She passed 6/25/83.)

Sadly, Mommy lost her battle with ALS on June 25, 1983, and Mary Vorwerk passed in July 1985 (date from familysearch.org). (Karen and I remember that Mrs. Vorwerk passed from ALS also, but cannot find verification on the internet).

Congratulations to the South Orange Library on their 150th Birthday!

Meggie

 


I know the title of this blog post is strange. I wrote this yesterday for Arts Unbound’s Story Slam. I knew I was going to do the story slam for about 2 weeks now, but only prepared for it the day of. It’s been a crazy kind of time around here, and I am flying by the seat of my pants, which was the original name of this story. When the story was finished, I liked it enough to keep it, but had to change the name. This one works. It’s really what we all are doing when we are battling as formidable a foe as ALS.

Sunday is the Walk to Defeat ALS in Saddle Brook. This is my 8th or 9th year walking. The team’s name has gone through a few changes. First it was “Lainey’s Legacy” for my Mom Elaine Kall Marlowe (nicknamed Lainey) who succumbed to this disease in 1983. One year it was Lainey and Lorraine’s Legacy, as we had a Co-Captain who lost her Mom to ALS. This year, we changed the name of our team to SO/MA’s Legacy to reflect all those in our community of South Orange and Maplewood who are suffering with this devastating disease, and those who once lived here, but ALS took them from us.

My friend Arthur Cohen is battling ALS, as was Dave Adox, who very recently lost the fight for his life. I only met Dave once, but have spoken with his husband a few times, and met some of Dave’s family and friends. Here was a young man enjoying life in the finest way possible: with a loving partner and family. He was the type of man who kept in touch with schoolmates, many years after school ended. He was concerned with the well-being of others.

When his elementary school classmates found out that Dave was suffering with ALS, many came to see him and stayed to help. At his Shiva, I saw wonderful pictures of Dave growing up. Many pictures of traveling, many pictures of friends…lots and lots of friends. And all the pictures on Facebook after his passing showed just how many people loved him and felt a tremendous grief at his loss. He was such a wonderful friend to so, so many. Dave lost everything to ALS at a very young age, but he never lost his spirit, or his love. Arts Unbound partnered with Dave’s husband Danni for an Art Bender a few days before Dave died, and a mural was painted on my old apartment building on Irvington Avenue in South Orange. Dave was so happy to be there. I saw the pictures and thought how wonderful that he could see it.

My pal Arthur amazes me and reminds me so much of my Mom, who never gave up, and always believed a cure would come. Arthur lives in a different time than Mommy did though, thank god, although he may not be able to see it in everyday things. People still may stare at him, or not understand that inside his atrophying body is the same man with the same brain that he had the day he was diagnosed.  ALS rarely affects the brain, which remains lucid throughout this cruel ordeal.

I would venture to assume that Arthur is probably a better, more enlightened man now than he was on that dreadful day. He now has firsthand knowledge of the temporalness of life. Not just of being alive, but of what we have, who we are, and what we have come to expect as our normal. And did Arthur find out he was sick and just give up? NO. This man said, “Okay, I have one of the worst diseases known to man. Let me start a business, and give the proceeds to The ALS Association to help others like me, to help find and supply treatments and ultimately, find a cure.”  Did he just tell everyone, “Please do this for me?” NO. He has been actively involved in the creation and operation of PickALS, his pickle company, since Day One.  I always tell him that I think he is a force of nature. But sometimes it is nature, organic or mutated, which forces us to make that choice: Lie down and take it, or take action. Arthur is the epitome of taking action!

In 1980, when my Mom was diagnosed, many had never heard of ALS. The ALS Association and ALS TDI were not in existence. She received her help from the Muscular Dystrophy Association.  When Lou Gehrig gave his famous farewell speech in Yankee Stadium on July 4, 1939, the public may have read about ALS in the papers, but it was considered a very rare disease at the time. I am sure that without reference to Lou, many never gave it another thought.

The disease is still considered rare by the CDC, with approximately 5600 new diagnoses a year, roughly one every 90 minutes. But look at this way: This is one of the worst ways to live and die that I know of, and every 90 minutes someone is told they are going to have to go through this…and every 90 minutes, someone is losing their battle with ALS. So this disease disposes of its victims, and then regenerates itself with new ones. The average life span for those suffering with ALS is 2-5 years. That’s some chilling statistics to me.

Mommy didn’t know all the statistics, because it was a relatively unknown disease at that time. She just knew that she and a few of her neighbors were doomed to spend the rest of their short lives in the prisons that used to be their active bodies. Mommy had Bulbar ALS onset, which first manifests in changes in voice and speech, with a harsh, hoarse or strained voice. She thought she had a sore throat. She was auditioning for Off-Broadway and to join a prestigious theater group which would help her reach her goal of BROADWAY! Finally she would achieve her dreams. Finally, the children (all ten of the damn kids) were grown, and she could really spend time doing the very thing she had planned to do all along.

     Not so fast, Lainey. The sore throat is not going away. She has it for about a month. She keeps saying that it’s not going away. We think nothing of her having a sore throat for a month and not going to the doctor, because she never ran to the doctor. She wouldn’t even take US to the doctor for any of our real ailments that she kept telling us were imagined. She was a Depression Era baby with ten babies of her own, and the thought of giving away money to find out you have a sore throat makes no sense. It’s only when the supposed laryngitis gets so bad that it’s affecting her acting that she does go, and after several tests, is told she has ALS – Amyotrophic Lateral Sclerosis. What does that mean to her? What does that mean to us? Not so much, except we are told that it’s fatal and there is no cure. That’s a sucky thing to hear when you are 55 years old and just about to start on the life you always knew was your destiny.

Mommy was not as active as Arthur is when she found out she had ALS. She was never involved in fundraising, or trying to find a cure.  People did stare at her all the time as if she was an invalid. She was not an invalid, dammit. She just couldn’t walk, or talk, or really move. But she could communicate; at least on paper, at first. When she still could use her hands, she wrote in her journal, “It’s so hard to lose your voice when your whole life’s work is based on communication.” Later, she had an alphabet board that she could move her eyes across to pick out letters and spell out words and sentences. But to be an actress, a director, a writer, a lector, or many of the other roles she played without speech…it was a tragically ironic fate that befell her.

Still, she insisted on living as normal a life as possible, and that included going to places and doing things the same way she always had. Except that in the early ‘80s, there were no real accommodations for the disabled, as we were just beginning as a society to ‘learn to be tolerant’ of people who were ‘different’. So, we tried to go to the Outlet stores in Secaucus. Packed up Mommy and her wheelchair and headed out there…only to find there was no wheelchair accessibility, and so we had to turn around and come home. Then we tried to go to Toys ‘R’ Us on Route 10. We got in the store alright, but the aisles were too narrow for the wheelchair, so we had to go get what Mommy wanted to buy for her grandkids while she waited at the front of the store.  People stared at her in her wheelchair, and spoke to her as if to a child. They didn’t know. They weren’t taught that what you see does not always inform what is really going on.

She had always gone to plays; she was not only an actress, but a lover of the arts. We went to a play right in South Orange, with her neighbors. I wheeled her in and sat next to her. She made some noises because she had such a terrible time trying to breathe. People were turning around in their seats and giving her the stink eye. The stink eye! To my sainted mother who just thought maybe that she wasn’t dead yet. She thought that maybe she could still enjoy her life while she was on this side of the grass. She was dejected.

Did she give up? NO. She didn’t give up her cocktails. We pureed her five o’clock cocktail and she drank it with a straw. Did she give up regular food? NO. We pureed her steak and she drank it with a straw. Did she give up going to work, going out, seeing people, caring or communicating? NO. Why? Because she was a fighter. Like Arthur is a fighter. Like Dave was a fighter. Like so many before them were fighters.

This disease claims some tough cookies. And that is why I pulled up my drawers and brushed my hair and came here to tell you:

  1. PLEASE remember that this disease can happen to anyone. That a wheelchair can happen to anyone. LIFE happens and things happen. I had a friend who worked for a rehabilitation center. He told me that the patients there called us, “TABS” – Temporarily-Abled Bodies. I like that. Because it reminds you that you are not special. You have just been lucky so far.
  2. I will fight with Arthur, and with the Daves and Mommys and all those who choose to claim quality of life for themselves, even in the crappiest of times.

And

  1. Possibly the most cliché thing I have said so far, though I would have to go back through my notes to be sure: PLEASE remember to be grateful for what you have, and love your friends, kids, family, LIFE. Tonight. Always.

The Walk to Defeat ALS season is upon us. I can’t believe it, but it’s that time already. They started registration last week, but I was just too depressed and tired and thinking about me to even consider it. Up until yesterday, I was seriously thinking about taking the year off. But, I woke up this morning and realized: If I am so focused on what is wrong in my life, how will I make things right?

If I am so focused on me and my petty problems, how will I help to make things better for others? If I cannot extend myself to help others and our world, how will our world change? I know, I certainly cannot do this by myself. My contribution seems like nothing. Then, the great ‘Analogist’ within me started thinking. It’s like the old litter commercials. If I don’t pick up the trash, and you don’t pick up the trash, then no one will pick up the trash, and our world will just be filled with it. If I don’t help, and you don’t help, then no one will help. So, it can never get better for those less fortunate, those oppressed, those suffering if you and I don’t help.

This is not to say that I really want to do this. I still am having this major pity party that’s been going on for pretty much the whole winter. However, there’s a part of me that remembers that doing for others helps us feel better within ourselves. So, there’s definitely a selfish aspect to this whole ‘charitable obligations’ thing.

It’s a bit weird that when we are motivated from egocentric thoughts, often we are more depressed and less productive. But, when we are allocentric, we find that we are not only working for others, we are working towards a balance in our own health and happiness. Charity therefore becomes not only about others, but indeed about us. It informs us that we are not just one person standing alone, we are a community, a world; equal in our desire to live well and free.

Today, I registered our team once again for the Walk to Defeat ALS. It’s true, I have a personal connection to Walk to Defeat ALS, in that my Mom passed from this dreadful disease in 1983. But, if the money raised this summer through “The Ice Bucket Challenge” were enough to stop this horrifying killer, then I would not continue the battle. Unfortunately, it’s not, and we have to continue the fight. To me, it’s not about dying, because we all die, and none of us know when it will be our time. It’s about the quality of life that’s afforded to ALS patients. It slowly kills you, while you remain lucid and fully aware of what is happening to you. That is terrifying to me.

I also decided today to get off the fence, and sign the sheet for Family Promise, which helps with multi-denominational sheltering of the homeless. I admittedly have been remiss in helping with the homeless. How bad is that? I was homeless, and promised to help. Whom did I make the promise to? Me. But, life moves on, and sometimes we forget that we do owe, really. We do. Even if you have never been sick and never been homeless or oppressed, and think you have always had a decent life. Brother, that may be when you owe the most!

I already feel better knowing that I have made a decision to continue with my human race. I can faintly hear Chariots of Fire music, far off in the distance. What is the sound of two hands helping? It seems pretty inconsequential at first, but if you really listen, it’s pretty sweet.

Wish me…wishing all you…luck!