Noelle Waits and Watches

(Sorry, no photo -- will add later, when Blogger is more willing to upload an image!)

The latest is that the likelihood of one or both of Noelle's legs being amputated has just escalated from the realm of possibility to that of probability. This is an issue she has wrestled with ever since she left braces behind in her mid-twenties and began using a wheelchair full-time. Not bearing weight on her legs has weakened them considerably and contributed to seriously poor circulation. For the last two years, her legs have been constantly infected, and she has been on a pump to remove the infection for weeks, sometimes months, at a time. Moreover, she has to clean and wrap her legs everyday.

A couple of months ago we had a real scare when the infection got into the bone. She slid by without an amputation that had been threatened by her orthopedic surgeon when I knew guy, trained at Stanford University, showed up on the day of her surgery at the local hospital and had some ideas about how to avoid amputation. Somehow, too, the infection had abated back out of the bone, making the condition less worrisome.

Perhaps that scare and abatement was simply a way to prepare us all for the inevitable -- or may it is not inevitable. That we will only find out in hindsight. At this point, though, it appears that amputation is in the offing.

Now, one has to realize that Noelle does not think about her legs like you and I think about ours. She has never felt them. They have always been limp. (She is paralyzed from the chest down.) So, for her they have been more of a nuisance, once she left behind braces (in braces, they legs were what allowed her to be upright), having to be moved by hand and often prohibiting or at least impeding movement from one position to another. She does not feel her legs, so if she is not looking at them, she is unaware that she has them.

People will sometimes ask her if it bothers her that she cannot walk. Her standard reply is, "Does it bother you that you cannot fly?" Her point is that people cannot "miss" flying because they have never experienced it. Likewise, she cannot miss walking because she has never experienced it.

Years ago when she first started using the wheelchair and was unaware of its complications and dangers, she tore of most of one toe when it became caught in the spokes of one of the wheels. The doctors had to amputate it. I was in the room with Noelle when the doctor popped in post-surgery. Concerned about Noelle's potential negative emotional reaction to the surgery, the doctor asked her kindly, "Are you missing your toe?"

Now, the word miss has more than one meaning, and Noelle understand the question quite differently from how the doctor meant it. "Yep," she replied brightly, "it's all gone."

The doctor seemed shocked. I don't think she had much experience with people who have been paraplegic from birth. "She cannot 'miss' her toe in the sense that you are asking," I explained to her, "because she never was aware of its presence."

And now we have the same issue with her legs. I am not sure anyone in the family was ready to accept amputation earlier -- and prayed that we would not have to (prayer answered) -- perhaps because of personifying it for ourselves and perhaps because of some idea that having legs, even ones that are non-functional, is more aesthetically pleasing than not having legs. However, in reality, the legs are misshapen and infected and not aesthetically pleasing at all. It is stereotypes, not reality, with which we have been living. Now reality has knocked at the door and said, "Folks, you have a choice. Legs or life." Put that way, there is no choice.

We have all gone through this kind of crisis before. Shura, as a teenager, much younger than Noelle, who now has three decades of experience against which to gauge her response, had the same choice: to die with his gangrenous legs or to live without them. He chose life. So will Noelle.

Road Trip: The End

Early last Monday morning, awakening not too late considering the pizza birthday party the evening before, we all tumbled out of bed, prepared to ready ourselves to hit the road. While Donnie took Lizzie to the airport so that she could head back to South Carolina, Doah, Noelle, and I packed up and checked out of the hotel. There we were in the lobby, suitcases all lined up and ready for stuffing into the van when he returned.

Since there were no real deadlines to meet on the return other than for me to be at work on Thursday morning, we moved fairly easily and comfortably from state to state -- and we did go through a lot of them, Oklahoma being one of them. We had decided for reasons of finance and time not to stop overnight but for Donnie and me to take turns driving, stopping only to gas up and eat -- and perhaps an occasional sight. As a result, we had a number of "roadside meals," with some of our seating arrangements giving literal meaning to that expression.

All was fine until we reached the Mohave Desert. We stopped briefly for lunch. As we enjoyed our meal, we looked across the way at two workers. What were they doing? They were mowing that desert! Donnie said that gives literal meaning to purgatory!

It was then that the phone rang. It was my boss, asking where I was. "In the Mohave Desert." Where else would I be?

"I need you on a plane tonight to Washington. You have a meeting there tomorrow."

Oh, really? Donnie allowed as to how we could "hurry home" if my boss was willing to pay the speeding fines. However, we were able to work out a slightly different plan, one that had Donnie dropping me at home first, then taking Noelle and Doah to their homes.

All's well that ends well, as the story line goes. I made it back just in time to catch a redeye plane to Washington. (It helped that I did not have to pass since I would catch a return redeye the next day.) The kids got distributed. The van got returned on time. And Donnie got some sleep -- the next day. Ah, life continues as usual...

Road Trip: Arrival & Events

We reached our destination on Friday, just in time to reach Sue, Doah's former teacher who had taken him into her home in 1998 while I was working at NASA, before she headed out for a party. At the party were two of her former assistants, both of whom also knew Doah. They were very excited to see him after more than a decade had passed. He was excited to see them. I took him to the party, and as I was preparing to join them, he turned to me pointedly and said, "Bye, Mom."

"I'm going to go with you, sweetheart," I told him.

"No, you're going to the hotel," he replied. I understood that these three ladies were very special to him, so special that he did not want to share them with anyone, let alone with his mother.

"I'll bring him back," Sue offered. I accepted.

Donnie and I went to dinner at Bob Evans while Doah was partying. Bob Evans was next door to the hotel, and we were still there when Sue brought Doah back. I called her on her cell and suggested she come by Bob Evans. She also had her 12-year-old son with her. So, we had dessert together and caught up on the last ten years.

Unfortunately, while I took pictures, I managed either to misfile them or overwrite them. I have no pictures either of our time at Bob Evans or at Pizza Hut (birthday party) on Sunday, yet I took many. Sigh! It's technology; I have a high chance of messing it up. Sigh!

Saturday brought the wedding, unusually themed as a reflection of the 1920s. Most people got into the spirit and dressed accordingly. A few things threatened by the wedding, but for an event that was five years in the making, nothing was going to stop the train from arriving at its station. First, it rained. Hard. Cats and dogs. Thunder and lightning. The power went out for four hours, which made it difficult for the bride and bridesmaids to get addresses and do their hair appropriately. Second, the rain continued for hours; the grass was still wet at 6:00, the time of the outdoor wedding. Fortunately, Jake and Jessica had an alternative indoor plan, and all was well that ended well.

As the reception wound down, the wedding party left to visit the grave of JT, a friend of theirs who was supposed to have been the best man, but who was murdered. It's a long story, and the murderer is in jail, but JT's absence added a small somber note to an otherwise joyful gathering. (JT must have been a special person because for the past year, his friends visit his grave regularly, and for twenty-somethings to do that in this day and age is remarkable.)

Sunday was also a special day. Noelle's birthday was May 30, Sue's May 31, and Rollie's June 26. Three of my nephews were also born in June. So, we did a joint celebration. We called my sister, Danielle, a June 6 birthday girl, to say happy birthday. And cousin Shelly, Lizzie's twin cousin (born on the same day in September) drove in from Columbus to join us in our pizza party. In all, we filled up 22 chairs at Pizza Hut, a real Mahlou outing, albeit with only a few from the 12 branches represented.

Then, we retired to the hotel because Donnie had to drop Lizzie off at the airport early Monday morning before we all headed back home. However, before she fell asleep Noelle had Donnie set up the laptop that the family had pitched in to buy her for her birthday and had gotten onto the Internet and friended everyone in the family. It has been the first sign of her continuing with life in a new direction since Ray died in January. Yes!

And then we all went to bed and fell asleep...

Road Trip: Conversations

Donnie, Doah, Noelle, and I took off on Tuesday for Delaware, Ohio to attend the wedding of our nephew, Jacob, to a young lady whom we like very much, Jessica. (Jacob is Rollie’s youngest child.) Since Noelle has long been no candidate for air travel – the airlines have to forklift her up to the plane and two baggage handlers have to wrestle her into her seat , we rented a wheelchair-accessible van and set out on the long, but quick, journey from California to Ohio. Road trip, road trip!

Now, on road trips, there are the sites and the sights, the stops and the gas (perhaps of more than one type), and the to-go snack and sit-down meal. Most interesting of all, in my mind, are the conversations. Here are snatches that I have heard over the past three days (we are now in Delaware):

Neighbor (30 minutes after we left): “Your porch lights are not on; I thought you told the Sheriff that they would be on so that he could check your place whenever he happens to be in town.”
Oops – text message to Shane: Pls turn on porch lights
Next day msg from Shane: porch lights now on.
Whew!

Doah (one hour after we left): “Are we there yet?” (This conversation repeated every 30 minutes or so the entire 2500 miles. Now settled in here in Delaware, I am certain he is busy re-winding that tape for the trip back. Oh, no!)

Lizzie (flying in, text msg, second day of our travels): “My flight was canceled. It seems that the airlines must have heard that someone related to you was planning to fly and panicked, canceling flights. I will try again tomorrow.”
Next day, Lizzie: “So where are you now?”
Me: “Enroute still. Where are you?”
She: “Made it; am staying with Cousin Shellie in Columbus.”
Whew!

Elizabeth (in response to an important meeting announcement to my assistant, who was not cc’d): “Are you planning to attend this meeting?”
He: “No.”
Me: “Huh?”
He: “I have a conflict.”
Me: “So?”
He: “Am sending my assistant in my place.”
Me: “OK.”
Whew!

Noelle: Mom! You are a bad driver!
Doah: “Ow! Yeah! Bad driver! Bad, bad driver!” (I had slammed on the breaks, and Doah had flown past Noelle’s wheelchair into the back of the front passenger seat, where Donnie was sitting.)
Me: “What happened to your seat belt?”
Doah: “Oh, yeah, seat belt!”
Me: “Yeah, seat belt! You okay?”
Noelle: “Yeah, he looks okay.”
Me: “Doah, answer me. Are you okay?”
Doah: “Can’t answer. I’m busy putting on my seat belt.”
Quick stop – Doah is fine. Whew! His seat belt is on, yes! He has not forgotten during the rest of the trip. Yes!
Doah (hungry and disappointed after miles of high chapparelle viewing through Wyoming and entering the planes of Nebraska without a pit stop in sight): “Cows, horses, and sheep; cows, horses, and sheep; cows, horses, and sheep!” (And your problem is?)

Me (text msg on Tuesday to friend we were meeting in Grand Island, Nebraska): “Miscalculated time; catheterization stops for Noelle are taking an hour, not a half hour. Will be arriving Thursday for brunch, not Wednesday for dinner.
She: “OK, but I will be in Lincoln on Thursday.”
Me: “Oh, well that is another two hours of driving, and we just lost an hour, crossing into the Mountain Time zone, so it will have to be dinner on Thursday, let’s shoot for 5:30.”
She: “OK.”
Me: “Road construction all across Nebraska; moving slowly. Let’s plan on 6:30.”
She: “OK.”
Me: “Ouch! I just noticed that somewhere we lost another hour to a time zone change – now on Central time. Let’s plan on 7:30.” (Note: We will be scooping up all those lost hours on the way back.)
She: “OK.”
Me: “We’re here….!”
She: “Wow! Really?”
It was exactly 7:30. Yes!

Donnie: “Our exit is coming up. Don’t miss it. There, right now: Indianapolis!” (I’m driving, and he thinks he is following a map, but thank goodness, I have the GPS.)
Me: “I can’t take it; it’s closed.”
Donnie: “Take the next one, then, and the GPS will re-route you.”
Me (as we approach the next one): “I cannot take this, either. It is closed, too.”
Donnie: Well, then, the next one; there must be several exits for Indianapolis from Route 74.” Me (approaching the third and final exit for Indy): This one is closed, too!
Doah: “Are we there yet?”
Donnie and me simultaneously: “Nooooo!”
Noelle (to Doah): “I don’t think this is a good time to ask that question.”
(We are still wondering why ALL the Route 74 exits for Indy were closed on Friday, just as we needed them. So, we headed south in order to go north. C’mon, that’s what the GPS told us to do, and when totally lost in unknown territory, one turns one’s life over to the GPS, whether its directions make sense or not.)
By some miracle, we made it to Ohio, losing only another hour along the way. So glad to be out of the car! So glad to have a different topic for conversation! Yes! I have been contemplating whether it is better to take that 2500-mile trip back on Monday or settle down here permanently.

Doah spent the shank of the evening at a campground party (in the rain?!) with his senior-year high-school teacher, Sue, and her two helpers, who just happened to have had a party plan when we announced our trip. The timing worked out perfectly. Afterward, Sue, her son Taylor, Doah, Donnie, and I had dinner at Bob Evans. (Noelle had to catheterize and preferred to be brought something back to eat in her hotel room.)

Then, my brother Rollie and sister Victoria showed up, swooped up Doah, and off they all went to spend the night at Rollie’s house. Doah saw lightning on the way back and wondered what was happening. Rollie reminded him about thunderstorms from the year that he lived with Rollie a decade ago, and then he remembered. (Donnie and I will never forget the string of lightning storms that plied their way up the Central Coast of California in 1999, beginning with dry lightning first without and then with accompanying thunder, followed by real thunderstorms. People who had not been outside the area were panicking. Many called the television station; someone asked if it were the end of the world. The television station stopped normal programming to allow the weatherman to explain thunderstorms to a fascinated audience. For us transplanted easterners, it was hysterically funny – and we were not worried about the world ending at all because we were busy watching a spectacular display of nature having one of her best tantrums.)

Last night, Donnie and I fell into bed with the lulling sound of fat raindrops plopping themselves onto the ground outside our window. Ah, rain! As I said, we don’t see much of that in San Ignatio, so we found the plopping delightful to hear.
This morning, we woke to a clap of thunder and flickering lights. The flicker lasted only a brief time. After that, large parts of town were in the dark. That was 10:30 this morning. Since then, we have vegged out in the hotel lobby, with others. Bob Evans, the restaurant across the parking lot, brought over food to feed us because with electricity out for hours, the food would have spoiled. We sat around the pool and had an unplanned feast. (Yes!)

Now, though, it is mid-afternoon. Hot and humid. No electricity. Therefore, also no air conditioning and no electricity. Last conversation as follows:
Lizzie: “Shellie is dropping me off at the hotel. Is 3:00 good?”
Me: “Sure!”
No way am I going to tell her that she is going to arrive to a bathroom with a glow-in-the-dark stick for lighting, no air conditioning, and no lights. She can change for the wedding in the same ambient light that we plan to use. The estimate is for the electricity to come back on some time after 3:30.

As for that thought about staying here permanently to avoid the road trip back, I’ve re-thought. I do like to have electricity on a regular basis, and I hear that lightning frequently knocks out electricity around here for hours. So, back, it is!

Views from the trip...

Last Night

This past Thursday (yeah, one week ago -- it sometimes takes me a while to gather my thoughts, and especially my notes) was my last night in Amman. Last nights anywhere are hectic. They tend to be even more so when one has yet to pack and the taxi leaves at 5:00 a.m. for the airport. But not so my last night in Amman.

Shem had been trying to find time all week to see me in spite of both of our schedules being locked in and very tight. After missing a couple of tiny windows earlier in the week, I was able to find a few minutes on Thursday between 4:30, when my observation of classes for our study abroad students at the University of Jordan (UJ) ended, and 6:00, when I needed to depart for a wedding to which one of the students had invited us. Quite by chance, one of his cousins, an American betrothed to a Jordanian, lived in nearby Zarqa and had planned her wedding during the time he would be studying in Jordan. All of the students were excited about being at a real Arabic wedding, and I, wanting to endorse their enthusiasm for learning more about Arab culture, agreed to attend with them. They promised that we would be back early. I knew otherwise. They had never been to an Arab wedding. I had. So, there would be limited time to pack and get together with Shem.

Shem was adamant. “I have to see you, Mom; I have to, I have to, I have to,” he wrote in Facebook and on Skype and then called and left the same message on voice mail. “I miss you sooooooo much!”

Of course, he needed to see me, and I needed to see him. We are, after all, family, albeit bonded by something other than blood. But how to manage all of it?
I ultimately decided not to try to manage it all. When we got back from UJ to the hotel where the students and I were staying, near Sixth Circle in West Amman, Umm Uthaineh to be specific, I begged off from attending the wedding, encouraging the students with my words rather than my presence.

That would give me a little more time with Shem. I text-messaged him that I was back. While waiting for him to arrive, I packed everything so that I was ready for my early morning departure.

Shem arrived promptly. We bought some postcards that I had promised to bring to folks back in the USA at the hotel gift shop. Then we decided to have dinner in the hotel’s lounge-café so as not to waste our limited time together fighting Thursday night traffic, which is always heavy because Friday is the holy day and the first day of the weekend.

As we ate and talked, leisurely now that I did not have to swallow down everything before 6:00, Shem asked if I had had a chance to see Leyla. Sadly, no, I told him, woefully explaining that the telephone number I had for her no longer worked and my email to her a few weeks earlier had bounced. Shem helpfully volunteered that he had her phone number. “Let’s call her,” he said with a bright tone and countenance.
Then his face darkened. “She might not answer when she sees my number. Or she might hang up when she hears my voice.”

“Why?” I asked. “What happened?”

“She got mad at me in late 2008 when all the Iraqis were fired by the administration of the uni because the vice president did not want to spend money on residency permits.” (The uni is the American university that I had overseen for two years several years ago at a better time in its history—I like to think I made it a better time, and folks accord me that credit, but as with everything else, one person alone is rarely responsible for good times or bad). “She thought that I should have quit in solidarity with my countrymen. However, I was exempted because I had a work permit from another job, and even if I were to be replaced, I needed to train people on my various jobs; in some cases, no one else knew what I knew after six years of working there. I also needed the money to finish my MBA. She already had completed hers. I did quit after I graduated, but she had stopped talking to me by then.”

“Call her and see what happens,” I said. He called, and as soon as she answered, he handed the phone to me.

“Mom!” she shrieked. “Where are you? Why are you calling from Shem’s phone? You cannot be in Amman! I have not heard from you since my email got blocked months ago. I miss you! How long will you be here?” The questions cascaded one against the other.

When I told her that I was in town, having dinner with Shem, but leaving in the morning, she begged me to wait until she arrived. She was not far away so very soon the three of us were sitting in a corner of the lounge-café taking care of old family business.

“I am angry with you,” she told Shem as soon as she walked in, “but I forgive you because Mom is here.” Just like blood siblings!

“You owe me big time,” he retorted. “Mom did not have your number; I did.” Just like blood siblings.

And just like blood siblings, the conversation darted between them as they aired old hurts and new hopes. I listened, occasionally questioning, rarely commenting, like with my biological children. At one point, I excused myself to go to the bathroom and returned to find that Shem and Leyla had found common ground and planned to stay in better touch. Although neither initially thought he or she had done anything offensive, that façade had been dropped, a new understanding had been reached, and real forgiveness seemed to be taking place. Yes, I would say, to the extent that a real family can extend over miles, across continents, and among cultures, we are a real family, a part of which resides in Amman.

It was as if no time had passed since the last time we sat and talked. No time at all. But little time was left of the night, and we had to go, each our own way for the night. Shem paid the bill and left. Leyla remained for a few minutes longer to smoke the rest of her banana arguila (hookah), and then we, too, parted, I for my room upstairs in the hotel in Umm Uthaineh, and she for her room in Rabia, one of the bordering sectors of town. Just for the night I could pretend that it really was the old days and in the morning we would repeat the evening. But that was just for the night for in the morning I would get into a taxi, go to the airport, get on a plane, and fly 10,000 miles away where I would await the next opportunity for a “family” get-together. In the interim, I am grateful for that last night in Amman.