I went to visit my mom on Halloween.  I brought her a little container of candy corn that someone had recently given me. I never loved candy corn, but she did.  When I gave it to her I reminded her that she used to love it.  She looked bewildered, but then again, she’d looked bewildered when I found her wondering the halls…bewildered about who I might be.  Yet she quickly picked up a piece of the candy and ate it in the manner she taught us to eat candy corn…bite off the white tip…then the orange middle…then eat the yellow end…like a religious ritual.

We sat on her bed and she told story after story….all starting off with gusto then meandering into some incoherent mess of words.  I am usually quite buffered from feeling when I go to visit so that I don’t experience the terror and pain of her slippage from Mom to mental Zombie, but on this day I felt.  Maybe it was the candy corn, or maybe it was the vulnerability of a holiday she had done so well by us year after year.

I felt tears considering a downpour, so instead I started talking…fast.

“You know Mom, you are a good story teller,” I said.

A few layers of fog lifted from her eyes.  “I am…I really am.”

“You’ve always been a good story teller,” I say.

“I have,” she said proudly.

“You taught me to be a good story teller,” I say.  I mean it.

Another few layers lift.  “You are a good story teller,” she says like she meant it too.

I flash on a memory from early childhood when she used to encourage me to put on my Mickey Mouse ears and sing this song she’d taught us for any and all visitors.  I was good at this song.  I was a good and cheap entertainment for our guests.

I remind her of this.  Her eyes look perfectly clear and her voice is a voice I seldom hear from her any longer.  It is normal.  It is sure of itself.  “I remember those ears…you put them on to watch the Mickey Mouse Club.  What was the song?”

She remembered The Mickey Mouse Club.  I start to sing the song in the terrible cockney accent she’d made me ape so long ago…

“A mother was washing her baby one night…”

She smiles and chimes in with me…

 “Poor little infant

So slim and so slight.

The mother turned ‘round for the soap on the rack.

Twas only a moment but when she turned back.”

 Our volume increases.  She is singing and laughing a little

 “Oh where, oh where is my baby she cried,

Oh where, oh where?  And the angels replied….”

I have a moment of the same anticipated glee I’d  have as a kid, and so does she, because the chorus is so terrible it is funny.  And then we start singing that chorus…and we are loud enough for the entire Alzheimered wing to hear.

 “Your baby has gone down the drain pipe.

Your baby has gone down the plug.

Poor little mite, so slim and so slight,

She should have been washed in a jug.”

 Mom is laughing and singing her guts out.

 “Your baby is perfectly ‘appy.

For she won’t have to bathe anymore.

Your baby has gone down the drain pipe,

Not lost…but gone ever more.”

 She then starts talking about my dad, someone she hasn’t mentioned for almost a year.  She uses his name and seems to recall I am her daughter.  We laugh and she tells a few lucid stories.  We both eat a few pieces of candy corn…in the proper manner.  I leave before she slips back into the scratched record mode.

 I call Eddie that evening.  I tell him the story.

 “It is good you go visit her,” he says.  “I remember that song.”  He sings some of it.  He was never as good as I was at the accent.  Still isn’t.  He then says, “I always hated candy corn.”

 “Me too,” I say.

 He laughs, “But we always ate it…like that…like she did.”

 Before I left my mom that day I told her she was a good mom.  I told her she always made Halloween special.  I told her about the outfits she’d make us, the special Halloween dinners.  I reminded her of the fun neighbors who gave popcorn balls and dressed up.  She nodded and acted like she remembered it all, and though I doubt she did, she did like hearing me tell the stories.

 

 

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I was at my sister’s house this weekend.  She is my only relative that is self-sufficient.  We enjoy each other’s company.  We are funny.  We don’t talk about the hardship of our mother and our brother’s conditions.  We mostly just go second-hand shopping and eat good food and drink good-ish wine.

We compete not with our or our children’s successes.  We compete by comparing our dogs.  We each have rescue dogs that are somewhat badly behaved.  They bark and steal food and don’t really care what we tell them to do unless it fits in with their plans.

Both our phones rang during the visit.  We both checked to see who was calling.  Mine had been Eddie many times.  I assume hers had been Eddie too…he is very balanced in his calling when he has a need.  I noticed I chose not to answer him.  Mostly because we were in second hand stores or sipping our good-ish wine in some eatery.  I noticed Vickie didn’t answer her phone either.  We didn’t mention that our brother was ringing the doorbells of our smart phones.

But Saturday night we were hunkered down watching her very limited television choices.  (She comes across a bit righteous in that she has only a few channels, but she seems to be quite happy when she’s at our house with the vast array of channels that cost about twenty dollars a month more than she pays.)

Our dogs have spent the day without us and have enjoyed barking wildly at any and all dogs and humans that passed by the well-used walking trail in front of her home.  They are mostly pooped out.  No one even tried to tame their protective glee.

We have forgone real food.  We eat smoked gouda, pistachios, and salt and pepper kettle chips with a bottle of chilled red wine Vickie had mistaken for white wine, thus the chilling.  It was a good wine, better than we usually have, and it really needed a minute in the microwave or something, but we drank it chilled anyway.

My phone rang.  I didn’t even look.  We were searching for anything but the Shawshank Redemption on the TV, (her package has one station that is always playing only the Shawshank Redemption…and every time we turn it to that channel the rape scene is just about to occur and I scream to change the channel and no one ever gets that I just saved the evening.)  We often watch the hot brothers on the home improvement channel…a channel I never watch at my own home due to the vast array of other stations I have there.

Vickie’s phone rang.  She looked.  “It’s Eddie,” she said.  “Should I answer?”  The cool red wine softened my reluctance to hear his latest need.  “Sure,” I say.

Vickie answers, “Hi Ed…..no, it Vickie….really?  I sound like Beth…no it’s Vickie.  What?  Ed…it really is me.  What’s going on?  Your computer?  What’s wrong?  Oh…you can’t get onto Internet Explore?”  A very long pause during which I formulate my response to him thinking Vickie sounds like me.  “Oh, I think that’s not a big deal…someone there should be able to help you.”

I put my hand out for the phone.

She has to reassure him a million times that his computer isn’t wrecked, that it just needs someone to get the internet connecting program to come up.  Throughout these millions of explanations she occasionally says, “Ed, it is me…its Vickie…I don’t care if I sound like Beth.”

Finally she says, “As a matter of fact Beth is right here and wants to talk to you.”

I grab the phone, “Eddie,” I say with feigned anger. “Do I sound like Vickie?…Hear me…do I sound like Vickie?”

“Well,” he says between inhaled laughter, “when I hear you both I can tell the difference.”

“Eddie, come on….who is cooler?”  I asked.

Vickie yells, “Ohhhhhh!” as if I have fouled her in a game.

Eddie gets hysterical.  “I am not going to answer that…I am not going to get into trouble.”

“That’s because I am cooler,” I say.

He is crazy with laughter….”Don’t say that to Vickie.”  He says.

“Because it’s true?” I ask.

He laughs some more, “A little bit, but don’t say that to Vickie.”

I am so very happy at that moment with ankles swelling from the months’ worth of sodium I’ve just ingested and the cool red wine oozing its calm through my veins and the looking to the television where Vickie has just found the premier of the first Borne Identity on her lousy stations, but at least an adorable young Matt Damon is looking at me.

I guess we are competitive about three things…our dogs, our television viewing opportunities, and who Ed thinks is cooler….maybe who gets the best stuff at the second hand places…

Just as I am relaxing into my win my naughty dog comes out of her coma and licks the gouda with an open mouthed kiss.  Vickie just looks at me with that older sister superior look.  The dogs’ bad behavior trumps all, even Eddie, in our weird little world.  The point and evening go to Vickie.

It was Family Weekend.

Family Weekend is notoriously hard. 

Family Weekend is, I guess obviously, the annual weekend when families of the head injured residents where Eddie lives come for a fun filled time.  There are themes and awards and games.  Even though everyone smiles and cheers, it’s always difficult because we are celebrating the lives of our loved ones who have been morphed into new folks.   It could be like celebrating butterflies, but it feels more like celebrating collisions. 

It’s gotten more difficult over the past ten years as the facility, once a national model, has fallen into stale routines and relationships, much like families often do.  So the cheers have been limp, and the smiles forced.

But we all go.  The out-of-towners go because they get in a visit.  The in-towners, like me, go because if you don’t your poor brother is seen as a loser without a family.  In the old days the events were at least more fun and community based.  We had big, real barbeques.  We loved the individual awards given each client.  They were the highlight of the weekend for they reflected the true friendship and intimacy between the staff and clients.  In more recent past they have seemed trite and read lifelessly as families ate stale sandwiches.  Few listened.

This year Ed won the Peanut M & M award.  He said, “Whoop dido!” with a sarcasm that would shame a fourteen year old who just got a buck in her birthday card.

Anyway, it’s been hard for many years, now.  This year, this year of me trying to engage in Ed’s life, I met with staff and did say how much I hated Family Weekend.  Mostly I focused on the food.  I was not ready to talk about the pain aspect.

So, I must admit, the food was at least 60% better than the previous five or so years of saran wrapped sandwiches and a hard, green peach.  This year the sandwiches came from a really good sandwich place….not a barbeque…which is a lot more fun that a packaged sandwich…but an improvement. 

And there was a drum corps that actually found a pulse in the crowd.  We smiled.  We tapped our feet.  We talked to other families.  There ya go.

A pulse.

Every year Ed says he does not want to participate in family weekend because it is “bull s***”.  So every year I make other plans. Every year on the Thursday before the weekend he calls and asks if I am coming to Family Weekend.  This year was no exception.

“Are you coming to Family Weekend?” he asks.

I don’t point out that he told me he didn’t want to do Family Weekend this year just two weeks ago.

“Do you want me to come?” I ask.

“Do you want to come?” he asks.

“Do you want me to come?” I ask.

“Well, it’s probably good to have a family on Family Weekend,” he says.

“I’ll be there,” I say.

It was a much better picnic, though the awards were “Whoop dido.”

We offered to take Ed to a movie after the picnic, in keeping with the Family Weekend theme.

On the way to the movie Ed asked if I saw our mom much.

“No…not enough,” I said.

“Do you visit when you go?” he asked.

“Of course, that’s what you do,” I say.

He laughs.

“It’s hard to go,” I say. 

“Yeah,” he says quietly.

As we drive to the movie I feel a pang of pain…that horrid pain of guilt mixed with regret with feeling sorry for myself.  I think about all the Family Weekends we went to as a large family with my mother and sister and our kids.  It was surreal. They had a 5-K run that was like a zombie race and made us laugh for year.  It was the only time I allowed myself to eat hot dogs, because it reminded me of our childhood living across the street from a park.  Ed won awards that made him smile because they were inside jokes between him and the staff.

We drop off Ed.  I vow to help make next year’s Family Weekend’s heart beat even stronger.

Driving home I say to the man I live with whose name rhymes with Heaven, “Thanks.”

“For what?” he asks.

“For going to Family Weekend,” I say.

“It’s Family Weekend, that’s what you do,” he then mock-references our daughter’s favorite childhood movie, Lilo and Stitch,  “Ohana, means ‘No one gets out of Family Weekend.”

I come home to a call from Eddie saying, “Hi Beth, I wanted to thank you for being my family on Family Weekend.  It made the Family Weekend bearable.” 

Yeah…next year.

I can’t believe how little I write on this now.  Ever since Ed got his own apartment and, more importantly, his computer back, his need of me has lessened and we have fallen into a more normal brother/sister relationship.  Our needs are more equal (unless his electric razor breaks…which it has…a lot) and social.

So the experiment worked…my brother and I are in relationship, and a good one, a sweet one, a valued one.  He and I talk once or twice a week, often just for a “what are you up to” sort of conversation.  (If I ask this he says, 100% of the time, “Same old s***.”  It is his standard, like W.C. Fields response to children, “I like children…medium rare,” but with Ed the answer might just be accurate.)

So I got a call a few weeks ago from Ed.  He was very excited, “I want to go see the movie “Jobs”.  The word Jobs was one of the hardest words he and I have ever had to negotiate over the phone.  J’s are hard so even when he spelled it I couldn’t get it for quite some time.   If it wasn’t for the verbal charade clues of “movie” and “take me” I may have never gotten it, which is kind of pathetic because the movie has been a little hyper-advertised.

It is important to note a shift here.  Ed has occasionally asked if we will take him to a movie, but this request was for a specific movie…Jobs.  He didn’t have to tell me why.  I knew.  He wanted to see the movie about Steven Jobs, the co-founder of Apple Computers, because Ed’s primary identity is not of a guy in a wheelchair.  He still sees himself an entrepreneur…a businessman.  The other reason he wanted to see this movie is that he and I were in high school as Jobs and Woz (the other co-founder, Steve Wozniak) were working out of a garage about eight miles from our home in the burgeoning Silicone Valley.  They were technology rock stars and we followed their every step of success like the hometown boys who make it to the pros.

On the way to the movie Ed asked how I was doing.  I said, “Alright.”  Another shift.  I always tell him I am fine, but I wasn’t feeling fine.  It had been a hard few weeks in my world.  “Why just alright?” he asked.  “I don’t know, sometimes I just have a hard time…you know…feel down, wonder what I have to offer, notice I am getting older, feel lonely.”

He paused and said, “That’s good to know other people feel like that.”

“I think everyone does at some time or another…you?”  I ask.

“Beth, I’m a guy in a wheel chair,” he said.

I didn’t respond.

He breathed heavily, the kind of heavily that reminds me he is large with very bad circulation…the kind of heavily that reminds me he and I will probably not be having these conversations forever.

“I have to change churches,” he said.

This was an unexpected veer in our drive-to-the-movies talk.

“What?”

“They won’t let me drink the wine anymore.  Someone dips the host in the wine now.  That’s bulls***,” he says.

He is a guy in  wheelchair…that drools…and his hands shake terribly.  I often wondered how long the priest’s patience would hold.  Ed slobbers into The Blood of Christ (even as a little kid I just couldn’t believe that one) and spills it all over the carpet (but if it is the actual blood it must be a bitch to clean out of the indoor-outdoor carpet in the sanctuary.)  Ed is a man of great faith…or love of wine and the after-service donuts, (not my place to judge), and this decision which no one discussed with him is weighing heavy on his heavy frame and heart.  His pain and my own meld like tuning forks to a plucked note.

“Have you talked to them?,” I ask.

“No, I just want to try another church,” he says.

“It might happen in the other church,” I say.  He breathes laboriously as if his thoughts were like climbing a flight of stairs.

“Well then I should talk to them…will you take me sometime,” he asks.

“Yeah.  We’ll go ask, and if they won’t let you drink from it at the other church, we’ll see if they will pour some in a smaller cup for you,” I say.

He brightens, “That’s a really good idea.”

We’re at the theater.  We see the movie about a guy with really good ideas.  Ed and I enjoy the sweeping vistas of the Santa Clara valley where we were raised.  Ed identifies with Steven Jobs’ business mind.  I do not, but my recent funk has been dissolved by my one good idea, taking Ed to see the priest and coming up with a solution.

We wait until after the lights come up so that he can transfer back into his wheelchair safely.  There is no one left in the theater.  With the lights on we can see the three foot radius of popcorn around our seats that Eddie has spilled or spewed during the show.  The sixteen year old who cleans the theater sees the mess, looks to his broom and dustpan that will be inadequate for the job and goes to get a vacuum.  This somehow sends Eddie and I into hysterics.  We are suddenly feeling rather powerful and purposeful and not the least bit lonely.

Ed loves movies.  There are two movies he loves most.  The first is What About Bob?

I don’t remember Ed loving movies when we were young.  I did.  I craved them.  I just don’t remember a movie that seemed to have an impact on him until a few years after his accident.  He had a VCR and I bought him a copy of What About Bob?  Those were the years when Ed did not laugh easily.  He was too close to his old life as a successful businessman and sexy beast.  He grieved.

The first time we watched What About Bob?  was the first time I remember hearing his laugh…his post-accident laugh.  It is a glorious laugh.  I can’t recall the laugh of my brother out of a wheel chair.  It was probably a little unkind…sneering…at least when I was around.   His laugh for the past twenty-six years is one-of-a-kind.  It is hilarious. 

It consists of a huge inhalation.  If there happens to be anything in his mouth…like food or drink…(which there often is)…it is pulled down into his windpipe like krill into a Humpbacks mouth…and he chokes.  He is used to choking so he has a good cough response that clears his throat…completely… at these moments.  The food or drink projects out of his mouth with force and speed.

This will be important as other movie stories emerge.

So we began watching the movie starring Bill Murray as a mess of man going to a psychiatrist office.  The psychiatrist, Richard Dryfus, has just written a book and is very full of himself.  He is in a hurry to see this guy and then leave on vacation so he gives Bob a copy of his book entitled Baby Steps.  Bob feels he is greatly helped by the book so when he starts to get panicky again he gets on a bus and goes to find the doctor at his vacation home.

It is hilarious.

Ed watched What About Bob? every Friday night for almost fifteen years…until he got his computer.  Every few years we had to get a new copy because the previous one had worn through.

One night after he’d been watching it for over a decade he invited me to watch with him.  I did.  I couldn’t believe how loud he still laughed…and at every single gag.  .  It was hard to breath because Ed’s constant oxygen sucking laughs had almost cleared the air dry of the stuff we need to inhale.

He got very serious at one point in the movie because he wanted me to verify that there was an editing error.  He stopped the movie and showed me the moment over and over.  I watched.  He was wrong.  I showed him how he was wrong.  He started laughing. 

“I have watched that a thousand times and I always thought that was a mistake.  He laughed hard at himself…a skill few have mastered as well as he.  “That’s so funny!” he said over and over.

I’ve always loved when people say, “That’s so funny.”  Ed is generous with that phrase, and he means it, and he says it about almost every movie that he loves…which brings us to the part 2 of Ed’s love of movies….

Eddie is so happy.  He hasn’t been this happy in forever.  He has legs again.

The Internet has been quite an issue for a while.  It’s always seemed like his way to sexuality which is only fine-ish, to be honest.  If he were just my older brother I simply wouldn’t want to know about his sex life…I wouldn’t talk about mine with him.  He was a bit of a man-whore…I have always honored sexual connection as sacred.  He definitely would have laughed at me the way older brothers can dismiss anything important to their little sisters.  In a perfect world I wouldn’t have anything to do with his sex life, but he wanted access to the Internet a zillion years ago.  Once he got it he accessed porn and sex chat sites that infected his computers over and over again the way his body would have been infected had his sexual encounters been in person instead of virtual.

His infected computers have been a pain that I leave mostly to my sister as punishment for leaving this town…for leaving the day to day issues and need for contact of my mom and brother to me.  It is an annoyance for her that makes me chuckle a little…the way lip smacking in her ears and putting my dirty bare feet did when we were younger.

But over the years the Internet has gotten faster than Ed’s dial up.  We haven’t up-graded him because in the past land-lines were somehow more secure for virus’, especially Ed’s cyber-sexual viruses, than wireless.

About six months ago his dinosaur of a computer and the land line that seemed to be run by squirrels on a wheel somewhere in India began to fail him.  His access to his chats sites dissolved…one by one.  He tried to tell us…but we ignored him…because we thought it wasn’t the end of the world…just less access to his sex life.  We…my sister, me, his staff…silently agreed this wasn’t a disaster and attempted only mildly to remedy the problem.

About a month ago he began to get depressed about it.  So I finally sat down and asked him what was going on.  It seems that over the decade that he’s had the Internet he developed friends…real friends on-line.  Ed doesn’t have real friends….he is cognitively too high functioning for most of his head injured peers and physically too low functioning for the staff.  His friends are in the cyber world…they don’t know what he looks like, how he speaks, what his disabilities are….(except for spelling…Eddie could never spell!)  He’s just a guy.

When we spoke about losing the chat rooms he said he’d been talking to some of these folks for about ten years.  He worried they didn’t know where he went.  He worried he might never find them again.

So…I spread the word to everyone that this was actually a huge issue in Ed’s life…in his need to connect, to share his thoughts, to develop friendships.  And…we all pulled together and got him a new computer (this came from the facility) and wireless….and now….Eddie is so happy.

We talked today about it and he said, “Beth….it’s very important to someone like me…the Internet is my legs.  I have my legs back.”

 

 “Hey Ed, it’s me…so what was the funny story?”

“What?”

“You called me the other day to say you had a funny story to tell me.”

Silence…

“Um…..I can’t remember….what was it?”

“I tried to call but your phone was busy for days.”

“Um…oh yeah…so I was at the mall on Friday….you know I go to the mall on Friday…right?”

(note….I am writing this as if this is how the conversation went…but, in reality I repeat back every sentence he says so he can let me know if I am interpreting him correctly.)

“Yeah…you go shopping for your snacks.”

“Yes…so I was at the mall and this woman came up to me and said, ‘Every time I see you I feel so blessed.’ So I asked her why and she looked up to the sky and said, ‘I don’t know, but he does.’”

I laugh.  “What was she like?”

“Strange…..that was sort of a compliment.”

I feel a surge of protectiveness that people are so condescending and don’t even know it.

I ask, “What do you think she meant?”

“I don’t know…it was so strange.”

“I was hoping you were going to say she paid for your snacks.”

He laughs, “No…she just looked to heaven.” He pauses, “Has anyone ever walked up to you and said, ‘You make me feel so blessed?’”

“Well once the old Italian woman sitting next to me in this little restaurant in San Francisco touched my hair.  I pulled back because it was so weird and she said that in her culture that if she didn’t acknowledge something beautiful like my hair or the beauty of a child it was like cursing it.”

“Once a guy came up to me and told me I was going to be an angel.  He didn’t know me so it kind of blew my mind and then he said, “You’re in a wheelchair because you are just paying your dues.’  I took it with a grain of salt.”

“For four days after your wreck you were almost brain dead.  When you came out of the coma you told me that you had gone to heaven and that you loved it and wanted to stay, but that God told you that you had to come back so you could provide jobs for people.”

“Really?”

“Yeah…you said you loved it and you were really mad you had to come back, but that you were not afraid of death because it was so amazing.”

He laughs easily, “That’s cool.”

“Yes.”