The Alex Project: Part 1 - Starbucks, Staircase, Laughter

If this were a movie it should open today, May 20 in my office.  Perhaps the camera would come from the sky, through streets of canopy oaks and through a college town into my office window. 

There you see April, Alex’s aid, sitting on a chair alone, listening intently.

In front of her, in a circle around a computer is me, then Alex in his wheelchair, tilted back a little but as close to the screen as his chair will allow.

Next to us on the unused part of the desk are remnants of the breakfast I brought and fed Alex. He’s so skinny and since his movements are so limited he can’t get himself food or easily have food delivered so I do my best to drown him in calories every time I see him. 

This past Saturday my daughter selected Alex’s menu: Panera macaroni and cheese with a brownie followed by a Starbucks caramel crunch frappaccino and brought it to Alex's group home where he lives with profoundly disabled, mostly nonverbal people. 

Alex calls the people he lives with “clients” and I tease him that it sounds like he lives in a hair salon.  He thinks its funny too, like the people who live there would book themselves for a long stay in a small house.

In the year I’ve worked with Alex I’ve seen hundreds of people look over him, through him and around him. I’ve heard people talk for him, over him and around him as well, so I’m listening very carefully. I’ve learned to sit and not interrupt him and offer say for him what I think he was about to say.

He takes a deep breath and swallows hard.

“Find the one from my exam about the home schooling.” He didn’t get the sentence all at once, but he got it out, twisting himself with effort.

I nod my head. I know what he means.

I downloaded over 3000 student bloopers from history exams into an excel spreadsheet and have worked on sorting them by era and key word and the idea of hunting for one particular blooper is mindnumbing. 

And not what we’re working on right now.

First we need to make the cover.

Again he says he doesn’t know how to do art things so I pull up a page of templates. His eyes widen.

Have you ever done art I ask fully expecting him to say yes, yes of course, art therapy is part of his life. 

But he answers no.

 He can’t hold a pencil,  a cup, pen, spoon or a brush but he can do art, I know he can, and I want him to have this and say he designed it.

Alex picks the image he wants to convey – stairs, because they symbolize all the obstacles he has to face.

 I nod and agree and pop a few images up.

Alex asks for this color, then that one and after a few decisive responses he has a big part of his project done, but not the biggest part.

 In order to finish his work for my class he has piles of work to go through  but our attention is taken away by voices coming from the office next to us. A student is talking to a professor about his grade. I’m not sure the conversation was private; if so the student didn’t do a good job of using his inside voice.

The student asked why his grade couldn’t be an A and the professor said something about a print out of grades that show the student didn’t earn an A, wasn't anywhere near an A and in fact had done not a single bit of A work all semester. 

The student isn’t satisfied begs outright for a grade change based on nothing but the fact he was willing to beg until the professor caved in.  

A long “buuut whyyyyy?” crossed from the other office to mine and that’s all Alex can take and he throws his head back and laughs loudly.

I try to cover for his laughter by reading a line from the spreadsheet in front of us, of a college history exam where a student wrote that Columbus came to America and met Napoleon. 

Alex laughs at that, and so do the rest of us in the room. 

He nods his head, use that one for our project, and I mark it for the second round. . 

Fun is fun, but we have work to do. 

A Week in the Life of an Organ Hoarder

Sometimes the best part is to start in the middle of the story. So let's do that.

I figure the pain isn't going away and go see Dr #1.

I tell her this is what's wrong with me, here's a simple fix, please let's fix this today.

She does some tests and shrugs and asks why do you think THAT is wrong with you? Let's get you to an ultrasound, stat. I need you there in 10 minutes.

Out I go.

 I feel rotten and I don't want to be poked and prodded. I want relief NOW and I'm grieving a quick fix and cursing traffic but I get myself to the ultrasound.

It's empty and clean and it smells good. This is a nice sign. The man behind the desk introduces himself warmly and I feel like I found a concierge until he mentions he's in my online class. I straighten up and smile. Yes, the online class that starts this week. We talk about the book he needs and what's due the first week then I sit in a quiet chair and hold my sweatshirt like a teddy bear.

The ultrasound is quick, the most painful part being that it was administered by a Gator fan with a large but tasteful Gator statue prominently placed. 

The next morning the nurse calls.  My X looks fine, my Y looks fine, there seems nothing wrong with my Z either, but I should go see Dr 2 because maybe, just maybe...

So make the appointment. Part of me says no, let it be, but the other part says this HURTS and I'm tired, and I cannot live with this pain, no way.

The week passes. The appointment comes.

He is a nice man, one I've known for the better part of 15 years.

I saw him last year for a pain like this, one that wouldn't go away forever and he offered to take the pain away by removing the offending organ(s).

He spoke of it like it was an inevitable part of the aging process, give into it, get it over with.

I didn't.

Now I'm back. He goes over the new ultrasound.

There is nothing wrong with my X. Nothing wrong with my Y and Z either. Nothing at all.  But still, he agrees that MUST be where the pain is coming from and offers to put me on pills.

Pills? No. I don't want pills. I took a long stroll down pill road and don't want to live there again.

Then you know what the next option is, he says, throwing it out there, then sitting back, fingers laced.

Surgery.

He nods.

I ask if it would be the small surgery he offered last August, the surgery that I never scheduled.

No, this time it would be XYZ. The only option considering my age and my level of pain.

I shake my head but don't say no.  This would be elective because I'm not diseased, right? This isn't urgent, I'm not in harms way.

He agrees, then brings up my age and the inevitable demise of unused organs.

I tell him I'm still using all my organs and they all look good. But I can't live in this pain.

He nods and says try the pills, give it a few months, if you're not better we should schedule.

I leave quickly, more in shock than anything. I don't want to have my organs harvested. They haven't been found guilty of any offense, and it seems wrong to indict them for this without a shred of evidence.

I don't cry, I don't get mad. I also don't pick up the pills.

I decide I'm going to live with this pain, even though its growing, because it's just pain and I'm not sick. By this point the most I can do is sit on the sofa under a heating pad, wondering if I'm a closet organ hoarder, a crazy lady who keeps harmful rotting things inside her. I shake off the thought.

Then I check my voicemail.

It's Dr #1.

They got more results.

 I was right it was what I'd said.

It wasn't my XYZ and I don't have any problems with my XYZ it was DEFINITELY something else entirely.

They prescribed me the pill I asked for over a week earlier, and I picked it up, happily.

Camp Horny Aloe: Subtitled "I am Not Kuwait"

I got there before she did and sat in the car staring into space.

The nurse called back about yesterdays’ stuff while I was driving and I hung up just as I pulled in her long driveway.  Don’t ask me exactly how the nurse said it but it came out mechanical and even hurried like I was annoying her. Basically she said here is step B, step C, and now do this and this. Understand? Goodbye. 

And because I did understand I got off the phone and sat there quiet, waiting for my friend to pull up and bring her sunshine. Which she did. 

This is a special day, anyway because we are in this tiny space of time between when college classes end in May and when public schools end in June. 

In three weeks we will both have our kids 24 hours a day. For now, our kids are at school for a blessed bunch of hour while we are totally free. This freedom is earned and will be enjoyed, no matter what.

She shows me around her house. It feels homey, peaceful and safe. I imagine her kids sleep very well.  

As we step into the backyard a gorgeous cat greets me. There’s a pool (clean!) and a huge grapefruit tree. Over there are berries, there’s the corn (corn!!) growing, and over there is the broccoli.

She deserves a trophy for even imagining this, much less getting it done. I’m proud of her for having a home like this in her heart and actually doing the hard daily work of making it a reality, but I don’t tell her because that would be awkward.

So we sit down outside at the wooden table with the huge umbrella.  The cat patiently lets me pet it and we start talking about this that and nothing.

Then it comes back to the news.  I want to talk about it; I don’t. I have choices, I have options, I have decisions.  I can do something before it gets worse,  or just wait until it gets worse. My first instinct in life is to wait for a few counts, don’t rush. Doing nothing isn’t a long term strategy but it’s a short term coping mechanism I’ve mastered.

Now that I understand what’s going on with me, I feel like I can deal with it mentally, I don’t need more medical intervention than that.

There, next to the cat and under the umbrella I think I’ve decided to do nothing, and if hurts I’ll just think, “Oh, that’s to be expected” and then go on with my life.

Until the wasp comes.

 It’s a HUGE wasp probably lured by the delicious garden and giddy drunk with Spring smells.

The wasp divebombs between us and I duck. I fear no roaches, no rodents, no cats, no birds, no dogs, no snakes. But wasps are evil and not to be trusted.

Unlike me, my friend stands her ground.

Before the wasp can even decide if we are worthy targets she pulls out a towel and whips it at the wasp, putting it on the defense.

I’m pretty sure she also yelled a few choice things at the wasp, but I was too much in shock to say anything. I’ve never seen a woman fight a wasp.

This is awesome.

It retreats for a moment, looking shocked, then comes back at her.  

Now she’s mad and really tries to kill the wasp before it can attack us.

I’m shaken out of my own fear and point out “OMG YOU’RE FOLLOWING THE BUSH DOCTRINE! ATTACK BEFORE YOU’RE ATTACKED!” and we laugh so hard we forget the damn wasp and go inside.

Suddenly the Bush Doctrine makes sense to me. I mean, I’m not about to attack Iraq, but I get why it’s good to attack first instead of waiting to see IF the wasp was going to really sting us. 

We continue with our mid-day round of storytelling and such. 

She needed this. I needed this. She cooks for us, just a few things, but it’s a feast I haven’t known in forever and the timing couldn’t be better.

I check my watch. Too soon I’ll have to get Zack, but we still have another hour.

Because this is my first time at her house she gives me the formal tour of the rooms and cool light fixtures, then we go outside so I can see the rest of the backyard, the part on the other side of the pool. There are flowers, there’s cactus, and there’s a… what?

What IS it, I ask, staring half in shock, half in admiration.

It’s aloe. She says, shaking her at the shocking plant.  

I didn’t know aloe could do that. I guess this one is male? And that it likes us?

The two of us stare at the long thick stalk coming out of the usually quiet aloe plant. I have never seen an aloe plant with an erection, but this one looks downright gloriously fertile and obscene.

We love it, and I take a picture to forever remember this.  I’d post it here, but it doesn’t do the plant justice and also, I like to keep my writing PG. This aloe is XXX. Trust me.

I check my watch again. Ten minutes until I need to be in the car.

We go back to the table under the umbrella.

The wasp returns and dive bombs at me.

I duck and scream “I’M KUWAIT! HELP ME!” and we fall over laughing because 20+ years later Operation Desert Storm is that interesting.

She shoos the wasp away (again, my hero) and I get up to go.  We will do this again next Wednesday and the Wednesday after that until the kids get out of school, so it’s a quick and easy hug hug goodbye see you next week.

In the silence of the car on the way home I let the thoughts run around my head…. the doctor, the Bush Doctrine, Kuwait.

Things are supposed to make sense, really, they are, if you just line them up and look at them the right way and let them become a story.

Before Zack’s bell rings, before I have to put on my mommy face, it all comes together.

Then I get it. I’m not Kuwait. I don’t want to be like Kuwait. I’m supposed to learn from history. 

Kuwait just sat there and Iraq invaded them. Colin Powell and Stormin’ Norman will never come rescue me.

That’s how I came to decide I’m not going to wait for this to get worse.

I will face this, I will be fine.

I will come back next week and the week after that to Camp Horny Aloe and we will all be fine.

5 Days in Cuba: Chapter 3 - Big Cups and Angry Birds

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The sun sets, the mosquitos arrive. I'm going through my options mentally and then erase them because I'm not leaving this airport without my Mom.

Then Mom leaves the building.

What was it, they ask, what the &^^% was ut I want to ask but I let her explain.

I can't believe what it was;  it was not what i thought and suddenly Cuba feels like a planet stuck in an alternate universe.  I promise I'll tell you what it was, in the book, when these stories are ready to be printed. Until then please keep your seat next to me as Machete speeds us through the narrow streets around jeeps and horses and bicycles to  dinner at hotel L;union.

Last year we all went up to the hotel room and went through the gifts right away. This year is different.  Everyone is starving and maybe traumatized and Mom keeps shouting "vino!" so we drop the bags in our room and have dinner with Mila (abuela's brother's daughter), her husband, her son Joelvys , her grandson Xavier (pronounced SAPier) and now Mayulis (the doctor, my cousin with long hair and bejewled nails). 

We sit down to dinner without my mom who is upstairs because she needed to talk to my dad for a minute. 

The waitress is my friend; I met her on my last trip, as well as her husband, her daughter and her mother-in-law. We get along.

They all order Paella and beer. Mom arrives and orders a bottle of wine.

I ask point to the menu and ask the BIG question -- is there spaghetti?

Yes, yes there is spaghetti, they knew I was coming, everyone jokes.

OK, fine I point out the menu says it’s with cheese and green vegetables. 

Yes? The waitress nods. OK, I shrug, I guess that's what I'm supposed to have, after all my complaining that there's no spaghetti in Cuba.

Mom orders something steak and everyone else at the table orders paella. Once the ordering is done, the wine bottle arrives, along with several tiny shot-sized  glasses that are apparently the normal wine serving sizes on this communist island.  

After a long day of travel my Mom and I are giddy and burst out in laughter at the small glasses. 

I shake my head. I'm here to bring change to Cuba, I'm here to help, one minute at a time. And right here and now, they clearly need help with their wine glasses. 

 No, no tiny glasses, bring us normal wine glasses,  Yamila the waitress takes the tiny glasses up and exchanges them for bigger glasses. 

This is a good sign.

Mom pours wine and the tension at the table is palpable.  It’s like they’re all sitting there waiting for something, waiting for us to do or say something so bad it’s obvious in their silence, their terse answers to my questions.

I get it and excuse myself to go up to the hotel room. This time we are on the inside of a square that overlooks a courtyard and is open to the sky.

A short paunchy halfbalding man with a shirt bearing the Cubataxi logo barrels by me, beads of sweat lining his brow as I approach a blind corner and I surprise him.

He shrinks towards the wall while racing forward, shouting silently with his body language that he wished to be unseen but it’s too late. I know that regular Cubans aren’t allowed in hotels, not casually, and I’m sure he’s up to something and I shake my head when he can’t see me.

My key actually works (every time anything works I’m excited, even when my car starts) and in the room I quickly search around for the gifts I brought them tucked in pockets of my carry on luggage.

I find them  and dash back downstairs. The food wasn’t there yet (of course) so I distributed what I brought down.

Here, for you, -- I give the 15 year old boy with the spinning dollar sign belt buckle a black box and he looks confused. Open it! I command and he does. There, it’s an iphone 3 loaded up with every game possible.

One day people will wonder who brought Angry Birds to Cuba, and people will shrug and wonder, but you and I know the answer.

He stares at it and realizes it’s a camera and then fixates on that. 

I lean back into the silence and observe he does not look happy, no happier than if I had given him a helmet with moose antlers sticking out that smelled like poop.

He didn't hug me or say a big thank you, not really anything. Maybe he was tired.  I let that go.

Next I hand my cousin an iPod (my treasured favorite ipod that I gave great thought to not giving away) with a huge amount of memory. It’s filled with movies and songs and also it can be used as a massive storage device on an island that lives on sharing files via USBdrives.

 He too is quiet,  not excited or particularly thankful. He turns it over in his hand whispers something. And nods his head when I show him the connector cable. 

He nods. The silence comes back to the table. 

Fine, OK, I’m bigger than being all about someone getting excited about my presents.

So I just go on and pull out a box with rings that I refuse to wear anymore. One is white gold with diamonds; the other is a matching set with gold and diamonds and emeralds.

I show them both and let them pick which one they’d like.  They look at each other and smile and tuck the box into Mila’s purse, neither of them having even tried a ring on.

  A lesser woman would have been maybe annoyed a little but I know the pain of buying awesome presents for my kids and saying “these are from Santa." I'm prepared. I’m OK.

I finish a glass of wine and the food comes.

First everyone gets their paella then Mom gets her plate of meat and last my spaghetti arrives.

Yamila sets my plate down and then looks at me expectantly.

This is spaghetti with green vegetables, I ask in English then Spanish. 

She says yes and leaves us to eat.

I poke and prod with my fork. There are no green vegetables in my pasta, just white chunks of god-knows-what.  I take a bite. It’s OK.

Really, it’s not OK, it tastes like it was boiled in bad water. Maybe it’s the cheese, I think, then take another sip of wine and another bite. 

The little white squares are potatoes, cut up, mixed with pasta. Ew. 

Yamila comes up to ask how it is. I say it’s pretty gross, no one puts potatoes and pasta together and she nods and adds that’s what she thinks too and adds maybe it’s the cheese that’s bad. 

I have a few bites of my Mom’s steak and finish my glass of wine. 

Mom pours herself a second glass and pours me more and the bottle is empty. 

Without saying a word we both know these glasses are like hourglasses. 

They have our attention until we finish our wine and then we will get up and hug them goodbye.

Mila asks about our plans this week and I let my Mom explain.  Tuesday is Tialourdes house; Wednesday is Havana; Thursday is exploring; Friday is coming home.

Mayulis offers that she is free tomorrow and would love to see us. Mom gets a stern look on her face. Tomorrow we are visiting Tialourdes; we need to give her our full attention, she’s 91. Olgita will make us lunch, and people will be coming through to visit. Mom ends with say why don’t you come by TiaLourdes house at 330 or 4 and rescue us.

Yes, yes, it is agreed that Mila and Mayulis will come by at 330. And yes they know where Tialourdes house is; it’s on the Prado, which is like being on Jackson Square in the French quarter, right in the middle of things.

I know they want to know what we brought Tialourdes, and also they want to know what we brought them in the two unopened gusanos, but it’s not time to go there. I want to TALK. So I tell them a story and when I stumble I make my Mom translate. 

I tell them the story about what I’m going to do tomorrow, what I’m going to say to someone at TiaLourdes house. They look confused, and Mila shakes her head and says NO! no, no Missy.

I shake my head back and say yes, yes, I’m not looking for an answer because I know the answer, I’m coming here to TELL them the answer that’s in front of everyone and no one sees.

Mayulis adds, no, no Missy and looks at her Mom like “stop her!”

And then I pause and give them each of the facts lined up one, two, three, four, finally FIVE.

They wince and one of them nods despite themself.

Mila again tells me No, no you really can’t talk about that and I respond (and I’m telling you my Spanish is good when it’s good) don’t worry, don’t worry you aren’t responsible for me, and so I don’t answer to you.

I pause and look around. My mom is half laughing and half shocked. 

She can’t believe what balls I have and she knows better than to try to stop me because she also believes my one two three four FIVE stack of facts.

I know I’m right and I also wonder if little hamster wheels of though ran around in their heads, wondering what other bombs I might be coming here to drop.

A palpable awkwardness lingers at the table. I ask them each about work, about life. 

I remind them I never see my Mom, that this is the first meal we’ve had together since last time we were in Cuba, and apologize for being silly. 

The check comes and Mom pays it; we have envelopes with cash separated for each event and each thing we are planning for all of the 5 days, and this is right on the mark. 

Everyone gets up and excuse themselves despite my not very strong offer they come upstairs to the rooftop bar and watch my Mom and I catch up. 

It’s Monday and everyone has work and school (except Mila, that’s another story) so they all politely decline and we hug hug hug and make plans for Tuesday.

With them gone, Mom and I realize we aren’t tired at all, and head up to the rooftop.