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Heaven is for Real…..

Sundays belong to me…perhaps they belong to me and the man who lives in my house, but mostly they are mine.  I am not generous with this day.  They usually include coffee and long bike rides and deep naps.  A meal might be made in the evening…easy friends over to hate Joffrey and love dragons…dark chocolate and port sucked and sipped.  They are not the holy days of obligation from my childhood where church and such horrors as fatty ham, forced naps and visits from veiny relatives reigned.  Nope, obligations have no power over my Sundays.

This may not seem very important I know, but it is, so I’m bothering telling you so….(Dr. Suess, The Sleep Book).  Today, a blank paged Sunday, found me, after coffee with the sun risen and papers read, wanting to take Ed to see Heaven is for Real.  So I did.

There has been a shift.  I am afraid if I am able to articulate what that shift is I will lose my standing as both benevolent sister and cynical Rat Packer.  I like those roles.   But I need to articulate this…and even if I come across as the most shallow soul on the planet, because of my Sunday rule, I have no obligation to post this.

This thing with Eddie, this reestablishing our relationship, has been lovely in that I feel I know him well, I feel I am being a good sister of a disabled man, I feel significantly less guilt.  We enjoy each other more.  He is less needy and demanding.  I am very glad I decided to do this.

But as the year mark hit, and we’d overcome so many barriers to a relationship, we hit a plateau.  I mean most relationships do that, right?  I got busy with a project, but we spoke at least once a week.  We got through the holidays in much better form than before.  We were good.

But it seemed that very quickly I was avoiding his calls and feeling put out by the havoc his ten-ton chair was having on my wrists.  I thought of him less, kept out of his business. 

The shift actually occurred not because of him…but it is most apparent because of him.

The shift came with me.  After a lifetime of trying to prove the worth I used to know I have, I stopped, because I knew it again.   I think this is a cultural issue, and not just mine, but it is mine we are talking about right now.  Hokey as it sounds…like the movie…when this shift took hold…suddenly everyone’s worth became apparent and equal…the playing field is currently perfectly even.  So now Ed has the exact same worth as the wealthy, politically powerful, the successful, the influential. ..the exact same worth.

So I felt a pang to go with him to see this movie he has really wanted to see.  I picked him up from church after mass and visited with the couple who buy him donuts and coffee after the service and visit with him in the community room.  I drove us to the movie, transferred him the six necessary times from chair to seat to chair again, got him settled, bought him popcorn, watched this corny film, put up with the stray pieces of moist popcorn coughed on me, and endured his laughter during quiet moments. (The loudest came when the preacher was praying with a dying old man.  The preacher asked, “Do you have anything you need forgiveness for?”  The man sobbed and said, “Everything.” Ed found that hysterical and inhaled several huge laughs.  He subsided only when I told him to shut up.  He then kept leaning into my ear and saying, in what he thought were whispers, “That was classic.  I have to remember to say that on my death bed.”)

And not once did I have that sainted feeling…that I was performing the good sister act.  I was really just enjoying being near him.

The little boy in the movie has an experience of being in heaven.  This bothers folks…church folks.  There are crises of faith with many over the boy’s story of near death.  Jesus walks with him, his meets dead relatives and enjoys the singing angels perform for him.  At the end the preacher who is his father gives a tidy summation that heaven is real…on earth as it is in heaven…in kindness and beauty and courage and love.  Sweet.

I came out of the theater into the warming day.  I walked to my car to bring it to where Ed waited near the slanted curb he needs in order to transfer from chair to my front seat.  It was a perfect moment of temperature and light and ease and truth.  Ed is my equal as is the little heaven boy, the old  Christian folks who comprised the audience, the poor kid who had to clean up Ed’s soggy popcorn off the floor of the theater, my veiny relatives…wait…there is one who cannot be put on the list…Joffrey…nope..but at least he is dead.

So yeah…I think I’ve been playing the great sister role…I think I’ve had him on my Go-To-Straight-to- Heaven card earners list…I think he hasn’t felt like anyone near worthy enough to take a minute of my Sundays.  I think my corn-ball factor has been hidden by a loss of innocence…a need to prove what is apparent…life is good…love is good…on earth as it is in heaven.

How I really know that heaven is for real is that as we drove home Ed asked if I thought he was stupid.  I laughed, “Did you really ask that?” He laughed, “Yes…remember in the movie when the dad told his daughter that all sisters think their brothers are dumb?”  I really didn’t know how to answer him because I have always thought I was smarter than Ed…mostly because I used language better than him and he was two years older.  But since his accident…his twisted form and slurred speech…since the wheel chair and the drool…yes, I have thought he was a bit diminished.  I was not thinking he was stupid at that moment…but most of my life I have felt his superior.

So I dodge the bullet.  “I think Vickie is smarter than you and I….don’t you?”  This seems  an easy way out of the question.  Vickie has been our superior in every way all our lives.

He says instantly, “No…I think you’re smarter.”

There is a rare silence from me.  I have never won any contest between my sister and I…ever.

“Are you saying that because I just took you to the movie?” I finally ask.

He laughs, “and you’re driving…”

I add, “And I got you candy.”

He add, “And you bought me popcorn…”

The list went on and on….

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Don’t get me wrong…I love Ed…but there is an odd following of this blog who have ceased writing to say they enjoy reading about Ed.  Instead they have become a bit belligerent in insisting I write this blog more consistently because he has become their friend and my lack of words gets in the way of their friendship with him.  My words are no longer the focus…they are just the mirror for his greatness…and I find that annoying as hell.  But, here…to silence his fans…

So Ed calls last week to say he has seen a trailer for a great movie. 

“Which one?” I ask.

“Heaven is Real.”

I wince.  I have seen the trailer…a lot.  Greg Kinnear is the dad of a little blond boy who has died on the table after some illness and is brought back.  He tells people all sorts of things that seem to prove when he died he went to heaven.    It’s not that I don’t believe there is life after this life.  I do.  I just try and do it and cool manner…like never talking about it to others, and making the supposed creator prove Its (yes,I am  politically correct enough not to endow God with “junk”) existence by getting me good parking places and pointing out the shortest line at the grocery with a beam of divine light.  And I must say that the junkless God has been rather under impressive in said proof.

Anyway the movie seems really sappy and I am so afraid that within the proof of heaven will be the Hater-God agenda.  You know…the Hater God…the God who is sending all of us to hell who don’t believe that the God who created my very cool hand and the even cooler Cosmos cares if boys like boys, or if we have sex before rings and rice?  Hell, they’ll  even send us to hell because we don’t  believe in hell …except maybe for those who play with folks like pawns instead of souls equally beloved as their own souls…those sorts of folks.

I digress… (because I can)…so I did not have a desire to spend ten-plus bucks to see this movie…much less twenty-plus bucks to see it with Ed.  But he’s kind of cute when he wants to see a movie. 

Because I don’t respond, Ed continues, “It’s about a little boy…”

….”who dies and comes back.” I finish.

“Yes,” he says with the sweetness of that cherub they hired for part.  “You know, I died.”

Damnit…he’s got me…he did die and came back. He trumps anything I can say with death.  He wins.  It’s like the talent show all over.  I surrendered immediately.

“You did.  We should go,” I say.

I guess some of my movie critic superiority oozed between my words because he asks with the sweet innocence of a four-year-old, “Do you want to go?”

 “Well, it didn’t get good reviews, but reviews aren’t always right, they didn’t like Jobs and we did….and you did die Ed…and you did talk to God,” I say.

He paused.  “Is there a movie you’d like to see?  We always see what I want to.  You should pick this time.”

God!!!  He was being so adorable…and I do not recall once in our entire lifetime when he asked for my opinion.  That dang blond cherub on the preview had already altered my brother, proving that heaven is real.

OMG….guess what movie we will be going to.

….to be continued.

 

The phone rings.  It startles me out of a funk my mind is sliding into.

It’s Ed.  He’s been calling a lot, but when I’ve call him back he hasn’t answered.

“What?” I say with feigned annoyance.  I am not annoyed at all. I am glad the ringing brought me back to terra firma.

He laughs.  “Did you just call me?”

“No…” I say but the line is now dead.  This happens frequently when he and I talk.  I wish I could say it was because he is handicapped and his fingers are less than nimble, but since I have the same affliction I think it is our genetics, the perfect bit of fat and bone on our cheeks that act as a pompous index finger, deeming who is worthy of a continued phone conversation and who needs to be cut off.

He always calls back.  “What?” I answer again.  This slays him.  We are predictable and that often cracks us up.

“Why’d you hang up on me?” I continue with the feigned annoyance in my voice. 

“It’s so weird…when we were talking my other phone rang,” he said.

This is weird because he has two phones in his apartment, but only one line.

“That is weird,” I laugh.  “Might be a ghost.”

He laughs, “Yeah, because I only have one line…right?”

“Right.”

“That’s the weirdest thing.”

“No Ed, you’re the weirdest thing.”

He does not laugh.  Truly weird things always trump my sophomoric humor.

“So did you call me?” he asks again as if I never said he was weird.

“No,” I say.  “Maybe you have a secret admirer.”

This does make him laugh…kind of cutely…like the thought tickles his fancy.

“Do you get tired of me calling and asking you that?” he asks. 

He does call and leave that message many times a week…it goes like…fumbling phone sounds, heavy breathing and then, “Hey Beth, it’s me.  Did you just try to call me?”

It is an odd message I get again and again.  The good news is that I don’t have to return the call because he will have forgotten that he had a call he thought was from me by the time I get the message.  It is an in-the-moment sort of call.  It always makes me smile at first, but then wince, because it makes it clear that I am the only person who calls him.  He is always bewildered when I tell him the call was not from me.  There is something so dear and so painful about that knowledge it stings my eyes.

“It’s weird that you are home still,’ he says.  It surprises me that he doesn’t know I am among the blessed few who don’t work full time. I spend my mornings writing books never read, hiking, biking, cooking…luxuries I tell almost no one, for it brings a flash of resentment across those forty-plus hour faces of my dear hard working friends.

“I don’t go to work ‘til the afternoon,” I say.

“Why?” he laughs incredulously.

“Because you and I are blessed in that we don’t have to work full time,” I laugh.

He cracks up, but I can still make out the words, “Yeah, but I’m handicapped.”

What can I say?

He keeps laughing and I do not respond other than join him in the chuckle.

“There are some advantages to being handicapped,” he says, and then he does something purposefully kind…he does not ask the question “What’s your excuse?”  I can tell he’s thought it, because Ed is a walking cliché responder, but he stopped himself.

“I better let you go,” he says as if I really probably do work full time and I had better start my work day.

 

It’ll be a year tomorrow since I began calling Eddie for things other than obligations.

Tomorrow our mother will be eighty.

A year ago Ed was mostly a burden.  He relentlessly called for perceived needs he believed dire.  I avoided his calls and felt alone in the carrying of that rather large burden called Ed. 

And then we had birthday cake with our mother…and we laughed…and he asked if I would help him, for the entire year, remember her age and where she lives…and something happened on that infamous 1…2…3 day… that date our mother had seared into our memories as young children, sing-songing “When’s Mommy’s birthday?  One, two, three.” 

I began calling Eddie, the way I call others; friends, colleagues, family.  I found out he was in the middle of the biggest crisis of his life; his connection to others had been cancelled due to glitches in technology and in an inability to communicate why this was a huge need.  I found a spark…then two…then many  within the ranks of the folks who care for him, and those sparks turned into flame…not a huge one, but enough to get him back on-line and back in touch with the world.

He is no longer my burden.  He is my brother.  He is my friend.

That does not mean is not a pain in the ass sometimes.

He’s been calling non-stop precisely because our mother seared the date of her birth into our soft minds.

“Beth….” he says slowly, “What are we doing for Mom’s birthday?”

“I’m going to pick you up and we are going to see her,” I say.

“You know, last year Vic brought me and we took a cake…we should bring a cake,” he says.

I cannot believe it.  The moment, our moment with our mother last year on her birthday, the one that altered my relationship with Ed forever….he’s changed the cast of characters…and the role of me is now played by my sister, who, by the way, was not present last year.

“Eddie!”  I yell.  “That was ME!”

“You sure?” he asks but starts laughing because he knows he blew it.

“Yes…I brought you and the cake.  I cannot believe Vickie got credit for that,” I say, but he is laughing too hard to hear me.

He gets suddenly serious, “We should bring a cake.”

“Of course we will bring a cake.  I know how to celebrate birthdays.  That is why I…brought…one…last…year!” I say.

He sort of laughs then says, “I got her a stupid present.”

“What?”

“I got her one of those things with tape that you get lint off your clothes with,” he says.

“That is a stupid present,” I laugh as I picture our mother who wears nothing but sweat pants and knit tops and doesn’t remember to brush her hair without prompting, caring about lint.

He laughs, but says, “It was easy.  I wish I had more money…I would have gotten her something nice.”

I suck.  This is important to him, this gift our mother will not understand or remember. 

We negotiate the pick-up time.  He gets worried I will drop him off at the mall, where he walks as a human billboard, late.  I ask, “What will happen if you are late?  Really?”  He says, “Nothing,” then laughs, “My boss might get mad,” referring to himself.  “I know,” I say, “he’s such a jerk.”  He inhales a laugh that somehow erases my guilt over dogging him about the gift for Mom.

“Okay,” he goes over the details of the morning for the fifth time then says, “so I’ll talk to my people here…”

“Yeah,” I say, “You talk to your people, I’ll talk to mine.”

He laughs, “Call me to remind me….okay?  Bye-bye?”  He then fumbles to turn off the phone.  I hear his labored breath and vocalizations of effort.  A burden-less click follows.

 

 

 

Christmas…so while others celebrate with large numbers of folks, that man who lives in my home and I share it with Eddie and only Eddie.  While my sister is three hours away with the grandkids wading through Santa’s plunder I am pushing Ed through ice and snow, cooking him the beef tenderloin he loves and I seldom get right, and watching A Christmas Story while he laughs so hard his appetizer plate spills and spills to the dogs waiting for their Santa plunder.  There are no other bodies to help that saint and I navigate Ed’s large mass into and out of cars and up stairs and onto sturdy couches, dining chairs.

Sometimes I feel a little sorry for myself on Christmas, but even though I don’t believe in a vengeful god that would punish if I failed Ed or reward my diligence, I could never be happy knowing he was not with family on the 25th of December.  So, we have a quiet…ish…Christmas and I fight my desire to pity myself.

As I pulled into the parking lot to pick Ed up I realized I had forgotten my mother’s gift from he and I, a lovely Chenille blanket.  I knew she would not know it was Christmas.  I knew she would probably not really know who Eddie and I were.  I absolutely knew she would not remember who gave her the blanket that would probably disappear into the communal belongings of those others who do not recall gifts or givers.  But I knew Eddie could never arrive empty handed to a visit with our mother on Christmas.

Dang!

So I get him into the car.  Transfer one down.

I tell him I forgot Mom’s gift.  He panics.  I know there is one grocery store open in our entire town and it happens to be on the way to Mom’s place.  So I leave him in the car with the radio on (but not the heater!) and run into Safeway.  It is packed with folks who seem to be doing their monthly shopping and not just getting the one ingredient they forgot.

I decide to bolster Ed’s gifts and get him some of his staples….Fig Newtons, Cheese-Its, a twenty-pack of Coke.  But Mom…what gift would be good enough for Ed?  There are some small, not good enough, little throw blankets.  I pick one up.  He will not be happy.  He will worry the entire day that we did badly by our mother.  Hmmmmm….keep scanning….oh, yes. There is a bear, a stuffed bear, soft and as big as a toddler.  This will please Ed and my mother who really only loves blankets and stuffed animals these days.

Ed is quite pleased by this huge token of our love.  “It is so funny,” he says, “that we get stuffed animals when we are little kids and when we are very old.”

We ride awhile in silence.  As we drive we both have to squint because the sun is so bright reflecting off the snow.

“Don’t ever drink the night before a snow storm,” he says with the seriousness and wisdom of a sage.  “It is no fun being hung over when you have to deal with the sun on the snow.”

He hasn’t been in snow and hung over since he was twenty-two.

We visit Mom.  (Transfer two.)

She adopts the bear with enthusiasm.

We leave.  (Transfer three.)

We get to my handicapped-barely-accessible home.  (Hard transfer four)

Ed settles into the sturdy lounger. (Transfer five.)  He gets his plate of appetizers.  We watch A Christmas Story.  The dogs are fed by Ed’s generous lack of coordination.  We laugh as Ralphie says the F word.  Dogs profit.  We laugh at the leg lamp.  The dogs are actually sated.

I over-cook the filets.  I burn the hell out of my thumb.

Transfers six and seven occur as Ed gets to the dining table.

We eat the marginal meal.  Ed’s steak is miraculously cooked to perfection.  He tells us of his Christmas miracle while we gnaw our cardboard steaks.    (The miracle was that he has needed suspenders to keep him pants up over his often exposed hiney, and the folks at the jewelry store in the mall gave him a pair.)

We transfer him back to his chair, (number eight) and then navigate him to the door.  As he stands at the threshold of our home he decides he needs to pee.   So standing there for all the neighbors to see he relieves himself into the urinal, his immodest hiney moons a red healer who saunters by unphased.

Back in the car, (transfer nine) he asks what I got for Christmas from he who is now at home exhaling because another Christmas full of transfers and over-cooked meat is complete.  I tell him I got a car, which I did.

“Why didn’t we drive it?” he asks with some hurt in his voice.

“I don’t know if your chair can fit in the trunk.”  I am not lying.  It is a Prius and the trunk is both high and small, but really, it is a car without dings and dents, and my old car is scraped and scratched from lots of things, but many of the dents are from botched lifts of his enormously heavy chair.  I tell him all this.

“I should see if they can get me a lighter chair to travel in,” he says.  I can tell he really wants to be in the new car.

His brain is churning.

“So, you should come by when you have some time and see if my chair will fit.”

As his brain churns I realize I have been timing our trip.  We are at five minutes.

“You know, we don’t live that far from each other,” he says like he just realized this.  He says it right as I realize this because at six minutes we are more than half way to his house.

“You could come and see if the chair fits and take me for a little ride,” he says.

I commit to nothing.  My back and wrist are sore from the many transfers and pushing him around.

When we get to his house he asks how long it took to get there, as if he knew I had been timing.

“Ten minutes,” I say. I am shocked for I would have sworn it took twenty to get from my house to his.

“Ten minutes?” he says.  “That’s a lot longer than I thought.”

Transfer ten.

 

So Eddie went to the other church…the wine giving church…the church with a priest who does not discount my brother’s equal need for an equal serving of Christ’s blood. 

He got there without me.  He got there because he assembled a sort of Catholic Navy Seal team to help him. 

He got Walt…the stalwartly staff member who tried to work with the new priest….but the new priest wouldn’t budge, in fact he hunkered down in his decision to stop giving the cup to the handicapped parishioners. 

He got Miles…the guy who gets Ed coffee and doughnuts every week after church in the community room.  He sits with Ed and talks, and has for years and years…maybe even a decade.  Miles, too, talked with the belligerent priest to no avail.  Miles started the escape-from-St. Joe’s plan.  He began to talk with the priest at the other church.  He told him the story.  He got a promise from the priest that he would treat Ed like any other parishioner.  He started planting the notion in Ed’s “I-hate-change” mind of switching churches. 

Ed finally agreed, but then he had to start working on the staff at the place where he lives.  There are limited in the number of drivers on Sunday.  This switch in churches would mess up the transportation schedule.

Ed worked on getting the other Catholic client to agree to go to the new church, but he is an easily swayed guy.  Once he committed to Ed, he panicked.  He decided he wanted to stay at St. Joes.

Ed did some fancy wheel-chair work and somehow procured a ride with another driver. 

So last Sunday he went for the first time.  He was so happy.  The people were quite gracious.  Miles was not there, so he was on his own, but people got him to the community room and fed him donuts and plied him with coffee and introduced themselves and welcomed him.  Even Walt was there.

But none of that happened until after he sat through the service, waiting, hoping for the opportunity to gulp the blood of Christ down his gullet, and not just have a slight taste upon a dunked host.  The moment came.  The priest smiled and he gave Ed the chalice in the manner he was been given the chalice for the past twenty-odd years since his accident.

All is well with the world.

As he told me this tale he said, “I probably shouldn’t have said this, but the priest came up to me after the service and we talked. I told him about what happened at St. Joe’s and he said that he understood my anger.  He said he would always give me the wine and not just dunk the host.  And then I said, ‘That priest at St. Joe’s f***ed up.’”

He laughed as he told me this.

“Eddie, Jesus!” I said.

Ed laughed louder.  He said, “The priest laughed and said, ‘You’re going to hell for that.’” 

We both laughed and laughed. 

When he gathered his composer Ed said, “You know, I think that priest from St. Joe’s did me a favor.  If he hadn’t stopped giving me the wine I would never has changed churches.  I like this one so much more.  It is nicer.  I can get around in my chair so easy.  The people were so much friendlier.  And the priest told me I was going to go to hell.”  He paused.  “This is my kind of church…and I would never have gone if all this hadn’t happened.”

I love that Ed took care of all this on his own.  I love that he knew how to get others to help him.  I love that he has friends that look out for him.  I love that he had this opportunity.  I love that the priest at St. Joe’s f***ed up!

Okay…so the host issue has not altered…it has gotten worse.  Another Eddie debacle.  There are two things Eddie cannot handle…1) change and 2) feeling handicapped in public.  The Host issue hits both of Ed’s no no’s…he’s pretty upset.

To recap the Host issue….Eddie goes to church every Sunday…since we were born.  He’s a Catholic to his toes.  He loves the tradition…he loves the Catholic God.  He loves the rituals….he loves the forgiveness…he also loves the donuts after mass.  Always has.

So…and  I may have some of the details wrong…but as I understand it Eddie went to mass a few months ago and the newish priest did not pour a little wine down his gullet as has been the tradition for the past twenty-seven years since Ed has attended this church.  He dunked the host into the wine and gave it to Ed. 

This didn’t bother me in the slightest because, Jesus, come on, who the hell wants to be sipping the back-wash of the hundreds of Rosary-saying, mea-culpa-ing parishioners that attend the 9:30 mass at St. Josephs?  I mean you get your blood-of-Christ’s worth of whatever the blood-of-Christ is worth in a dunk without the risk of some plague.

Ed cares…a lot. 

Ed cares because, “I feel so handicapped.  I feel like I am treated different.”  Then he adds a sacred, “That’s bullshit.” 

This has been eating at Eddie every day.  The injustice is like an acid drip on his well-being. 

So I call the guy who takes care of such stuff at the place Ed lives.  He’s a great guy who has been working with the likes of Ed for decades.  He is supposedly on the task of asking the new priest what is up with the host dunking.

I don’t get a return call.  That is weird.

So I am trying to get hold of the folks at the church.  Ed wants to jump ship to a better church, one that will let him sup from the cup of virus and bacteria infused Christ’s blood.

Then I hear something that makes me cringe.  I hear that this blog is being read by the staff now. I hear they are not pleased with my Family Weekend entry.   

Damned…this really isn’t supposed to be an open door to the musings of family members of the head injured…though I guess it is.    I reread the blog…it still stands, but Christ (the same one whose blood was spilled for our sins and whose blood is now dunked onto the host instead sipped by my brother’s limp mouth) I wasn’t writing this to teach nor offend those who work with Ed.

 I write this as a love letter to my brother…to let him know his highs and lows are as sacred as the chalice and the Our Father.  I write it as a gulp of holy wine and not a mere dunk that discounts his worth.

Anyway, we gotta do something about this dunked host thing or Ed may lose the faith that helps him rise each day and haul his ass around the mall and make bad jokes and say sweet things.