Sunday, November 25, 2018

What Am I Thankful For? Two Years and Counting

Two years.

After I was diagnosed with multiple sclerosis, one of my first questions was how long I had before I needed a wheelchair.

My fear was that I had only had a couple of weeks or months before life as I knew it became unrecognizable.

I've only had one MS attack so far. It left a few scars (or "sclerosis," in Latin), but its nothing that I can't handle. There's no way to know what kind of damage the next one might do.

So I'm just hoping not to have another attack, at least anytime soon.

When I read somewhere that on average, someone with my kind of MS on my kind medication, went two years between their first attack and their second, I was thrilled.

I had the promise of two years of free life, by which I mean two years to live life in a manner that didn't require a lot of adjustment.  I had to give up dairy and fatty food and be sure to exercise all the time, and some days, for no apparent reason, I would wake up and feel like I got hit by a bus. But those were just adjustment at life's margins.

I'm sure life goes on and wheelchair bound folks find plenty of ways to make it meaningful, but I was hoping for time to do as much as possible of the living I still had on my bucket list.

That was two years and 15 days ago.

So it wasn't hard to think of what I was thankful for this year.  According, to whatever I read at some website I can't remember slightly over two years ago, I'm officially beating the odds.

It's easy to take things for granted in life. I still do it, even though I try to remember that this sunset might be last one where my eyes work, or this Monday when I don't really wanted to write a brief, it might be the last case I ever get to work on.

I remember the feeling I had when I was in the midst of my first attack. I was almost done with a brief and I was afraid it might be the last one I might ever finish. I packed up my office, just in case.

I decided to go out with a bang, and I was prouder of that argument than any other one I've done in a long tme.

I've written many more briefs since, and I wish I could say I approach every brief that way now.

I wish I could approach every day that way.

I wish I could approach life that way.

I try to.

Sometimes it works.

I'm so thankful for the chance I've been given to still feel like myself, but I'm also going to be a little bit greedy.

I'm hoping that at this time next Thanksgiving, I'll have some other new adventures to be thankful for, including some half marathons and pretty sunsets.

I hope you have some adventures too. Try to, if you can, because this year isn't guaranteed for any of us.

Life is hard sometimes. Don't lose sight of the things that make it worthwhile.

Go hear some music.

Watch or read something that makes you laugh.

Call someone who loves you.

And be thankful for all the above.

Sunday, October 14, 2018

I Can't Do This

"I can't do this," I thought, when I heard the news.

Not something else.

Not more bad medical news.

Not another limitation that would change my life.

Not again.

"Hadn't I been through enough,?" I wondered.

Apparently not.

Two years ago I went blind in one eye and was diagnosed with multiple sclerosis. Six months later, I fell and broke my kneecap, which still hasn't fully healed, even after 17 months and 34 physical therapy sessions.  A few months ago I had a scary trip to the oncologist, as it appeared my MS medication might be killing my liver, but it turned out to be a false alarm. 

Just as my everything seemed to be getting back to normal, I asked my dentist about a little bump I had in my gums, on a spot where I had a root canal 20 years ago.  It turned out I needed immediate surgery (none of which was covered by insurance) to remove my upper front tooth, which had shattered under my gum lines and infected the area around it. The surgeon would then graft some new bone into my jaw so that some day it can support an implant.

I didn't ask from whom they got the extra bone. I think I can imagine. At least I'm not that guy, I suppose.

It's Halloween, so I guess it's appropriate I get the bone fragments of the departed inserted into me. I call it getting into the spirit of the season.

It's not quite as good, from a spirit of the holiday perspective, as having a pumpkin for a head, but I suppose I could look into that if all else fails.  

Jokes aside, it's going to be a long and miserable process.  I won't have a front tooth for seven or eight months, if all goes perfectly.  It will take four months for the newly injected bone from the dead guy to mesh in my jaw.  In the meantime, if I feel dead inside, it won't just be because I'm depressed about missing a front tooth.  After four months, the surgeon will go back in an insert a titanium screw to my jaw bone. 

Three-to-four months after that, when the screw is fully enmeshed into my jaw bone, I will finally get a new tooth implanted into the screw.

In the meantime I have a removable retainer that attaches to the roof of my mouth with a fake tooth on it. The tooth fits into the gap in mouth and it looks just fine, but it's driving me crazy.

It's bulky and super uncomfortable.  It isn't strong enough to bite into anything and it moves around whenever I swallow solid food.  It's basically useless as anything other than a cosmetic device.  I can speak with it in without a slur if I concentrate really hard and talk slowly, but the act of speaking is difficult and exhausting, which isn't ideal for an attorney who argues for a living.

To make matters worse, the doctor forbid me from exercising for the first six days after my surgery, and by day four I couldn't feel my left leg anymore.  I went too long without resisting my MS, and it started to take over.

I went to the gym that night anyway. I'd rather have a working leg than a working jaw bone. These are the choices I have to make these days.

My leg is a little better now, and I don't think I did any further lasting damage to my jaw, but it's going to be a long seven or eight months.  I feel like I'm living in a Whack-a-Mole game, where as soon as I spend too much time dealing with one health issue something else pops up.

I'm not sure I can do this.

There are two good things about my operation, if you look at it a certain way.

First, it's almost Halloween, so I can choose a costume that takes advantage of my missing tooth and have people believe that I really, really committed myself to the bit.  That's absolutely what I'm going to say if anyone asks.

The other good thing is that I didn't have to feel ready for my surgery.  It wasn't like so many other challenges in my life, like a trial or a bar exam, or a half marathon, where you were sure to fail if you didn't come prepared.  All I had to do was show up and hope my someone else had done all the prep to make the surgery go as it should.  I never felt ready for it, and I don't feel ready for a toothless life on the other side.  But sometimes all life asks from us is to show up and rest takes care of itself.

Sometimes that's all we can do.

A friend told me today how resilient I was, but I don't feel that way. I feel broken inside. (I'm broken on the outside too, actually. If I don't have my retainer in, you can see it when I smile.) I just don't know what else to do other than to keep checking off life's obligations, even if I'm not particularly happy about it. I can't just go to sleep and wake up in 8 months, or whenever there is a cure for MS, as much as I would like to.

After I was first diagnosed with MS, I found myself thinking that I couldn't live my life with whatever I was about to face. A voice inside my head that sounds like what I think God sounds like responded back that all I had to do for now was to make it through today. Tomorrow God and I could reconvene to see if we could do it again.

Almost two years later, we're still moving forward, one day at a time. I can't fathom living the next eight months without biting into solid food, constantly feeling uncomfortable, and wondering how on earth I can ever kiss my wife, but I guess I can make it through today.  .

Part of me feels like I'm being melodramatic. I haven't lost a loved one (I liked my front tooth, but I wasn't infatuated), I have a pretty good job and make a comfortable living, which hopefully a missing tooth won't derail.  I get to live in a beautiful little valley full of wine and sunshine, and my MS progression has been so much slower than it might have been.

I'm lucky in so many ways, and I don't mean to take any of that for granted.  But a different part of me feels like I got knocked down two years ago, and I keep getting kicked every time I'm on the verge of getting up. It could be worse, some would say, but that feels hollow because it's true of almost everyone, anywhere. It isn't enough to curb all the unhappiness in this unperfect world.

In "Finding Nemo," Dory the Fish tells herself to "just keep swimming," as a means of moving forward through her ongoing problems by doing whatever small movements were in her power.  I know others who have used this mantra to make it through times more challenging than I can imagine.

But I feel like I'm swimming against the current, and I'm tired. I feel like I need a floatie.

I haven't found one, but I do have a few people to keep me afloat as I struggle with the tide.  The friend who made soup at 5 a.m. and brought it over before I went to work. The one's who've said prayers or words of encouragement. Even the people who've said, "that must really suck," help me remember that I'm not crazy for feeling overwhelmed sometimes.

And let's not forget coffee.  At least I have coffee, which is the next best thing to a floatie of which I know. As of yesterday, my dentist even let me drink it hot again.

I'm in a coffee shop now, looking out at fountains flowing and people laughing on a beautiful day in Livermore. It's nice here.  When I'm done, I think I'm feeling well enough for a little run through my trail in the vineyards. Tonight maybe I'll plan what I want to do for my birthday. Maybe I can finally speak well enough to return some calls.

I really wish I could have a burger for dinner. There's no magic answer to make hard times fly by faster. Life is unfair.

But today still has beauty. Maybe I'll find it on my run, or maybe on my back patio with the fire lit. Or maybe someone will read this whose life feels upside down and feel less alone going through whatever you are going through.

At least for today, I think you can do i
t. Maybe I can do it too.  

Friday, August 31, 2018

Random Thoughts: Shouldn't It Be "Laborer Day"

I remember when summertime meant lazy mornings, late night ice cream, and carefree fun with friends. Then I got old and summer meant everything stayed the same as the rest of the year, except it was really hot outside. Welcome to life as an adult. Ain't it fun?

And welcome to an end-of-summer edition of random thoughts.

---

Why is the upcoming holiday called Labor Day? We aren't celebrating work, we're celebrating the worker. It should be Laborer Day.

And why are holidays on Mondays? Wouldn't it be more fun if the holiday were Friday and you didn't have to worry about work the next day while you are grilling? If I were running for President, this would be a featured part if my platform.

I once wrote that February was my least favorite month, but now that I live where it doesn't get cold, I've changed my vote to August. It's hot outside, tv is full of re-runs, there's no holiday, and there's generally nothing going on in the world. A least February has a holiday and the Super Bowl. Plus, it only has 28 days, so it passes quickly.

I walked past a transient woman the other day and she immediately screamed out, "I hate people." I wondered if I had done something wrong until I heard her, in the distance, yelling the same thing about both chicken and ice cream.

When I heard that Donald Trump's's attornery pleaded guilty to conspiring with him to commit campaign finance fraud, my immediate reaction was "will this result in Trump's approval rating going up two points, or three?"

Sometimes you hear about "seamless" transitions, when a transition goes smoothly. If one is going poorly, does that mean it's full of seams? Or seamy? Seamful? Why does no one ever say that?

I'm not sure which is the more backhanded compliment: being told I don't sound like I'm from Alabama or that I don't look like I have MS. Either way, I figure that because other people's sensory perceptions of me don't fit their stereotypes, I might as well add to the list.  I'm now hoping to be told I don't smell like I'm an attorney, that I don't feel like I'm tall, and that I don't see like I'm white.

Every time a turn on the radio, there's a new Drake song on that sounds exactly like the last one.

A few months ago I spent three hours in government meetings discussing sensitive information about a topic in the news. I needed a security clearance to take part in the conversation. That never stops people from telling me that my information (whatever I'm publically allowed to share, at least) must be wrong, based on what they read on the internet.

That's all for now. Enjoy your long weekend. For many if you, it just might be the highlight of August! (Even though it's technically in September.)

I hope your transition to the weekend has no seams.




Sunday, July 15, 2018

Blogging Through Prague

The plane landed in Prague nineteen hours after my wife and I left our front door, and it seemed to take equally as long for our luggage to come off the carousel. We had scheduled for our hotel to have a driver waiting for us on the other side of customs, but we were over an hour past our scheduled arrival and getting nervous he would give up and leave without us. I had a phone number to the hotel, but this seemed of limited use considering that my American phone doesn't work in Europe, so if they driver took off, we'd have to scramble for a plan B. 

We leave baggage claim, feeling that weird mix of exhaustion and exhilaration that comes after the completion of any long journey. It turns out that Prague didn't bother to have a customs office, so we walk right into ground transportation. Perhaps after having been closed off the world by Soviet control for 45 years, the people of Prague now want no barriers at all to people coming in for a visit. 

After searching just long enough to start getting concerned, we finally find a guy with a white board with my name on it. I say hello, in English and in Czech, but he doesn't seem to understand a word of either. The hotel advertised that their employees were fluent in English, but apparently that doesn't apply to their drivers. The driver comes within a half-inch of about six different accidents in a 30-minute hair-raising drive to the city center we finally arrive, and not a moment too soon because the driver seemed intent on killing us.

Sunday:

We walk into the hotel lobby, say hello in Czech, and then I tell the reception desk that we would like to check in for the reservation under the name "Andrew Smith" and hand him my driver's license.

"Do you have reservation?" he asks.
 
I repeat that I do.

"Can I get your name?" he responds.

I begin to wonder if everything I read about the people of Prague being willing and fluent English speakers was a lie from the chamber of commerce.

We are able to Czech in eventually, and decide we have just enough energy for a stroll to the main town square three blocks away. We have two of the juiciest sausages ever made and some tasty two-dollar beers from a kiosk in the square that cost $12 total, or in local currency, something like 125,823 koruna. Life is good, as we stare at the gothic tower that's the centerpiece of the square, except that we've been up for 23 hours and are a bit delusional.

There are two main, famous, historic buildings in Prague's center square. The Tyn Church is the gothic cathedral with the two spires that's in all the pictures. The other is the Astronomical Clock at the top of city hall, that has little figurines that put on a little show at the top of every hour, and have been doing so for literally, like a thousand years. We are surprised to find, on our arrival, that the clock tower is closed for renovation, and the show is on hold until later in the summer.

I hope this is not an omen of things to come.  

We walk back to our hotel and notice that we've been walking at least four blocks and the hotel, which was only three blocks from the square, is nowhere in sight. There was only one turn involved, so maybe we passed it. We cut back over to the block we had passed, but our hotel isn't on that street either. Nor is it on another street that looked vaguely familiar.

Our cell phones don't work and we didn't bring a map on what seemed like a foolproof three block walk. But nothing is foolproof if you're a big enough fool, or if you haven't slept in what suddenly feels like 384 hours.

To make matters worse, I didn't wear the compression sleeve I have for the knee I broke last year when I came out tonight. I only need it for long walks, and this wasn't supposed to be one. But we've now walked about 9 blocks trying to find the hotel that was three blocks from where we started, so we wind our way back to the square to start over again from there.

We definitely get the first two blocks of the way back to the hotel right, but it's a bit confusing from there. The left turn at the intersection that forks into three different streets. We were pretty sure we came from one of them, but we've tried them all without success, our phones don't work, we don't have a map, and we don't speak the language. But other than that and my broken kneecap we're doing fine.

My wife offers to explore the left turn on the next intersection north on her own to save me some walking and report back once she finds the way or runs out of ideas. Half an hour later, I hear my wife yelling my name from that general direction. We meet up eventually, apparently both having figured out where the hotel was long before we found each other.

It's bedtime almost as soon as we get back to the room.

Monday:
We don't sleep that well, but make it through the night. Maybe thing will only get better from here and the jetlag won't be so bad?

The downtown churches and museums are closed on Mondays, so we tour the historic Jewish quarter, a well preserved neighborhood where Prague had segregated its Jewish population prior to World War II.  

The main attractions there are a synagogue with all the thousands of names of the Czech Holocaust victims inscribed on the walls, and the mass graveyard where all the Jewish bodies were forced to be buried, because the Gentiles didn't want their own corpses to be defiled by contact with another race. Apparently even dead people can be racist. The quarter was a sobering and powerful look at the oppression of the people, so I'm happy to find a good lunch with cheap beer at the conclusion of the tour. We were also happy to get away from the tourists asking us to take their pictures at sites commemorating human suffering.

At lunch, we discover for the first time that sauerkraut can actually be good. Also, there's more sausage, and we have rabbit and pork dishes that were as good as anything I had ever eaten.  Funny how the morning can be full of suffering, but a good meal a few hours later changes everything.

Walking toward the main bridge, an old woman with limp and a cane asks us for change. My heart breaks a little, and I'm tempted to see what I have, but I decide to keep walking. I don't like to pull out my wallet in unfamiliar places, especially with all the pickpockets you hear about in tourist areas.

As I decline and pass alongside her, she lunges in front of me with remarkable agility, given her apparent condition. She blocks my way and asks again, angrily this time, for money. I decline as I walk past, and soon begin to wonder out loud if the cane she was sporting was just a prop.

"And someone might have been lurking in the wings to grab and run the moment you pulled out your wallet," my wife says.

Tuesday:

We didn't sleep last night. We didn't sleep much the night before either. The air conditioning in the hotel blows, but doesn't really cool. That was fine the first night, a Sunday, because we slept with our windows open and it was cool outside, but the street noise has been increasing every night as the week goes on. We're a bit incoherent, but struggling through.

We visit the city center's two big cathedrals, the public market and the museum of Communism, which portrays life under 45 years of oppressive rule before the Iron Curtain fell. The Czech people suffered under the Holocaust in the 30's and 40's, and then immediately were forced into an oppressive Communist political system from the 40's until 1989. No wonder the people are somber, and a glass of beer is literally cheaper than a glass of water.

We walk over the ornate Charles bridge that crosses the Vlatava River, which has cut the city in half for about 700 years. There is a jazz band on it playing Cajun music for tips, along with a number of other kiosks full of people selling random trinkets. The Charles Bridge is another ornate gothic structure with medieval lookout towers on each side, and its cobblestone pavement is open to foot traffic only. Every twenty yards--er, meters, or so, there's a new statue of along its sides depicting some Saint in the midst of a titanic struggle.  The flea market feel going on beside them seems kind of weird.

We get to the other side feeling hot and tired. It's about time to turn around and go home, but there's a church right on the other side too, so we figure we might as well see it. We buy a ticket to go inside, without realizing that we've actually only bought admission to its 200 foot--err, 600 meter, bell tower, for which there is no elevator. This becomes clear just as we reach the point of no return, so we trudge our way up the never-ending stairs. The view was nice at least.

Later, we make it back to hotel and sit for a bit before going to classical music concert, just as we would the following night. Prague was the home of Mozart for a while, so the concert venues and orchestras are reputed to be amazingly good. We don't go to the symphony all that often in the States, but maybe we would if they were as good as what we heard in Prague.

Wednesday:

We took the train up to Prague Castle, a massive structure on a hill overlooking the city which all the books said we has to see but that we were kind of unexcited about. It turned out to be a pleasant surprise, but it sure took a lot to get there.

We needed to take the train to get there, but we had read that the train stations required exact change. We walked to the main Tourist Information Center to ask where we could get tickets in advance, hoping that they would have them.

"Oh no, we don't have them here, but you can get them at a tobacco shop by the train station."

"Which one?," I asked.

"Oh, just any tobacco shop by the station."

"The tobacco shops are the only place to buy train tickets?"

"Yes, they will have them there."

No one thought this set up to be weird. Why would a tobacco shop sell train tickets? Do I also need to buy milk from the hair salon? Wouldn't it make more sense for the train station to sell train tickets?

We wandered in the direction of the station and passed by a convenience store. We asked if they had train tickets and got a funny look.

We got to train station and wandered a block or so until we found a tobacco shop. The person in front of us bought a pipe. We bought tickets to Prague Castle. Just another day at the office.

The grounds of the castle complex contained a little city within its gates. The St. Vitus Cathedral sits in the middle, a giant medieval church with stained glass windows every 10 feet  few meters inside. Each one had a different color pattern, and depicted a different scene, and it was prettier than I can describe, or even re-imagine. I posted pictures on my facebook page, so if you didn't see them, either it's your own fault for Unfollowing me, or perhaps I just defriended you. But regardless, St. Vitus was beautiful. Every time I came across a window that seemed the definition of what beauty looked like, one even better followed a few steps later.

Usually majestic old churches in Europe just feel like tourist attractions to me, and this one definitely had its share. But every once in a while the beauty inside transcends the crowds of tour groups taking selfies, and you can feel a connection inside to the something bigger to which the building was meant to connect. This was one of those places--one where you feel like your prayers aren't being said inside your head but broadcast through a satellite dish straight into Heaven.

I've been to Notre Dame, the Sagrada Familia, and a few other famous ones in Europe, but St. Vitus is my favorite.

We leave the castle, walking past the old dungeon where the used to house (and torture) the prisoners in all kinds of disturbing an innovative ways. We stop for a drink by the Vlatava River on the way home, at a place with a sign advertising "Fresh Sea Fish." Sadly, it was only three, so Sea Fish wasn't on the agenda, but we enjoyed our time respite from the heat alongside the water. It was nice to hear that the restaurants still served food, and that we didn't have to buy it from the dry cleaners.

We stopped to use the bathroom on the way home at one of those European pay toilets, where a nice woman of Roma ("gypsy") ancestry gave us change and thanked us. My change was correct, and I felt bad for even counting.  I wondered how much harder her job, and that of every honest business person of her ethnicity, must be with people always wondering if they are getting "gyped." I got extra angry at the fake-disabled woman who had accosted me a few days before for perpetuating the stereotype and making life harder for this sweet little old lady.  

Thursday

We were supposed to take a train to tour a concentration camp today. My MS had other plans.

I woke up and immediately knew I won't have the energy to make it out today. The day before had been hot and we had been more active than we had planned, and I was out of gas. I came down and had breakfast, and immediately went back to bed.

Somewhere around lunch time I stirred again, and started what might have been our best day in Prague. It was too late for our day trip, so we just wandered the city aimlessly, stopping at interesting shops and restaurants, buying a Tridelnik, the Czech version of an ice cream cone with a cinnamon sugary glaze on the cone, which might be the best thing I'd ever tasted. I'm not supposed to eat dairy very often because of my MS, so it's a good thing I didn't discover the majesty of the Tridelnik earlier on the trip. Once I discovered it, I was powerless to go a day without it.

We ate, we drank, we bought souvenirs. We took a picture with a giant inflatable panda in the town square. We heard drunken British soccer hooligans get way too excited about their team's performance in the very early stages of the World Cup. We stared at the church in the main square, and wished America had more cities with big squares where people gather to have fun and do silly things. We passed a shoe store and wondered if it might be the only place in town where we could buy ice cream.

I bet they sell cobbler as well.

But we'd rather have more Tridelnik.

Friday:

I woke up feeling normal on Friday, so we took the train (after purchasing tickets at a tobacco shop) to the bus station, where we took a bus to the Terezin Concentration Camp about an hour out of town. It was the transportation hub of the Holocaust operations in the region, the place where Jews were sent to acclimate to life in a Concentration Camp before being sent to the their final destinations, from which they would generally never return. Terezin had no gas chambers, so the Germans used it as the center of the PR scam to (falsely) show off to the International Red Cross that its work camps were humane. But behind the curtain, the facets on the sinks contained no running water, the food rations were miniscule, and anyone failing to abide by the harsh conditions were sent to the tower prison or executed in mass.  Group showers were enforced here, so that the population would be fooled into walking into similar chambers in Auschwitz, were poison gas would flow from the shower heads instead of water.

It was a harsh reality, in the middle of a well preserved but strikingly grim town, but it has one ray of hope.

Behind a hidden door on the back side of a store front with the city was a secret chamber leading to a Hidden Synagogue that had been created during the Holocaust. It was a simple room that looked like a cave, but its meaning was powerful. Even during the darkness, those suffering found a way to create a ray of light. We came across it at the end of our tour, and I was glad to leave the sea of suffering on a hopeful note.

Then we got back to Prague and had Tridelnik.

Saturday:

Time to go home, just as our bodies acclimated to European time. We were up way too late on Friday soaking in the last bit of the square. We caught our shuttle to the airport and were relieved to find that we didn't also need to check in to our flight from the tobacco shop as well.  We caught our connecting flight to Denmark, but I was disappointed that my stomach was too upset to want to eat a Danish that would be sold by people who themselves were Danish. Also, my wife had to endure my constant jokes about various things in the State of Denmark being rotten. Denmark leads the world in food-related bad jokes.

We left eventually, with no Danish, and we got home after a 10-hour flight that seemed endless. After about a week, our body clocks felt back to normal again.

I miss Prague. It isn't as glamorous as Paris, and it doesn't have a definitive touristy hook like the canals of Venice or even the quirks of Amsterdam. There aren't as many historical sights as London or Rome. It seems more like a city where people actually live, work, drink beer (and eat Tridelnik), and less like the tourist circus that envelops some of the other European cities I've visited. It was beautiful, but kind of sad. The people were formal, but polite from the outset and nice once you broke the ice and got to know them.

I miss the gothic architecture, and the cheap lunches on outdoor patios. I miss the symphonies, and the intrigue of seeing storefronts on cobblestone streets. And I missed the clock tower, because I never got to see it.

I hope I get back someday.  I could use another Tridelnik.

Saturday, June 30, 2018

Constant, Overwhelming Darkness. And No One Seems to Care

I woke up to another horrifying headline in the news. These days its more surprising when there isn't a tragic new breaking story.

The news is full of mass murders, children in cages, government corruption, and a revolving series of targets being bullied for the other side's political gain.

I walk around sad and angry, too, constantly. The skies look completely black but somehow even more darkness is looming. It's hard not to fixate on how hopeless things look, and to find a sliver of hope in all the debris of our broken world.

MS plays tricks with your brain, leaving many people depressed even when things are going great. When it feels like you're constantly at war with forces trying to oppress you, the depression becomes overwhelming.

The most personal for me was the disabled reporter. 

"That reporter and I are disagreement," the President said, in so many words, "and obviously I'm right, because … just look at him." It seemed scandalous statement, but Trump's loyalists didn't care. After all, they weren't disabled. 

As an attorney with a progressive disease that causes me to stumble around sometimes, my entire future livelihood depends on people rejecting that argument. Instead, people elected the person who made it President.   

Then he proposed a budget that eliminated funding for research to cure unsolved diseases. Then he got rid of the individual mandate, allowing healthy people to go without insurance, thereby raising prices for the people who can't be without it. Then a couple red states filed a lawsuit asking a court to allow insurance companies to discriminate against people with pre-existing conditions, and instead of defending the lawsuit, the administration said, "yes, please do." Jesus said that whatever we do the least of those is society, we do unto him, but most of the people who claim to follow him are unmoved. 

But why limit one's bullying to just the disabled? The President keeps moving from one powerless group to another to oppress. Disabled veterans aren't war heroes, he said. All Mexicans are rapists, and all Muslims are terrorists. All immigrants are gang members, and gang members are animals. Those who dared to speak out for racial equality in Charlottesville were equally to blame for their murders as the white supremacists who killed them. 

The people who aren't Mexican, former prisoners of war, Muslim, or victims of white supremacy are unmoved, because they aren't personally affected. Any maybe complaining would get in the way of their taxes going down a few dollars for people more fortunate than me, whose taxes got hammered.  

Now, it's the children under attack, which the administration justified on the theory that its ok to punish kid for their parents' crimes, and might even result in fewer illegal immigrants. This logic has a couple of flaws, the most obvious being that it isn't actually a crime to come to America and claim political asylum, and that we aren't usually in the habit of punishing people for the crimes of their relatives. If I go out and drive drunk, the police aren't putting my Aunt Margret in lockdown overnight until I sober up. 

The immigration debate as a whole is more complicated than this post can explore, but one thing definite is that our immigration laws allow for people to show up at our border from other nations and seek political asylum if they have a creditable fear of persecution in their home country. Sometimes asylum is granted, and sometimes it isn't, but it isn't illegal to come here and ask. Families seeking political asylum used to be either be set free on supervised release until their hearing or housed together at an immigration facility while they awaited their hearing to see if they qualified.

Then the administration starting arresting everyone, without allowing anyone bail. The immigration centers are now full from the abundance of arrests, so people legally seeking political asylum have been placed in federal prisons.

The law has long been that children cannot be housed in federal prisons, so this has meant that families are separated when the parents seeking asylum are sent to one. The immigration centers housing unaccompanied minors are overflowing from all the recent arrests, and using makeshift cages to hold people. I can't solve the immigration debate in this space, but it shouldn't we at least be able to agree that the children of people legally seeking asylum shouldn't be taken away and locked in cages for their parents "crime" of following the law?

A court has ordered parents and children to be reunited, but apparently no one was bothering to keep tabs on which kids in immigration centers belong to which parents, so there's a mad scramble on how to comply with the judge's directive. In the name of law and order, we have a system of disorganization and chaos. And as the Melania Trump's jacket taunted, they just don't care.

Whatever happened to that retort that "All Lives Matter?"

Religious minorities are being targeted too.

I didn't think a religious ban could happen in a country that claimed to have freedom of religion, but the Supreme Court disagreed. Four of the nine members said it violated the constitution. But the other Supreme Court justices hinted that while Trump's travel ban sure might seem like a pretext for religious discrimination, it wasn't really their place to do anything about it, what with separation of powers and all.  I've never wanted to burn my membership to highest court more.  

America can now limit access to the country based on one's religious preference. A lot of people are fine with that because it only currently serves to limit people from another religion and countries they find scary, not thinking about the ugly precedent being set. When a future administration bans Jesus fish on the back of cars, and cites a pre-textual reason that national security depends on doing so (say, because of a need to preserving precious metals), those who supported this ban will have themselves to blame. 

Meanwhile, scandal and chaos loom on every corner. Heads of government agencies use thousands of government dollars for personal pleasure routinely. The head of the EPA has his staff running his personal errands and working for his wife's private business on government time.

Trump alienates our allies and cozies up to dictators. High ranking government officials keep getting caught lying about their contacts with a Russian government who tried to influence our election. The President's campaign had a meeting asking for their help to win the election. The campaign denied that the meeting happened, until it was proven otherwise, and now its only defense was that the meeting wasn't all that productive.

No one seems to care.

I pray that God will save us from our worst impulses, and the church attempts to reassure us that God is in control. But God was in control during the Holocaust too, and look how that turned out.

It seems that God's control includes giving us free will to do awful things to each other, if we won't listen to God's instructions to love each other instead.

I can't think about how dark and hopeless things look too often, or I start to go crazy. I know things have looked hopeless before in human history, probably even more so than now. We aren't actively at war, people of different races can eat at the same restaurant, and flowers still grow. Things could be worse, and they might still get there.

I wish I could wake up tomorrow to a world where I didn't feel under attack from every side, but I can't do much to control that right now. I've heard it said that in times like these we need to create more beauty in the world to balance out the ugliness, to give more time and money to charities, and be more conscious of how we can help others overcome whatever struggles they face. That's probably good advice, but it doesn't seem enough.

We can vote for change, and for a system where no matter one's politics, we don't accept the notion of scoring political points by treating political opponents as sub-human, but there's no election anytime soon. We can speak out for the idea that fairness, basic human decency, and integrity is not subject to waiver as long as our preferred political party is in power.  We can pray that God allows us to find our better selves, and delivers us from our worst. We can try to be nice to people, in the hopes that we don't get in the way of their openness to change. We can convey that treating people better than animals and having sensible restrictions within our immigration policies are not mutually exclusive.

But still, none of these things seem like enough. And maybe it's for good reason. None of them feel like enough because we need to do them all,, as soon as possible, and as often as we can.

Then maybe, just maybe, then, we can introduce a little bit of light to help us fight the darkness.



Wednesday, May 23, 2018

Prayer and MS

People sometimes tell me that they are praying that God will heal me. I appreciate the sentiment.  But would people say the same thing if I had an amputated leg?

Although to be clear, I hope I never find out.

I've heard it said that if God could really heal people, there would be someone walking around with a formerly amputated limb that had grown back. After all, the argument goes, an all-powerful God could do that as easily as curing a disease.

Plus, that kind of miracle is more definitive. That is, its easy for a faith healer to pretend to heal someone who wasn't really sick, or for the placebo effect to cause people to feel better by the power of suggestion. An amputated leg growing back? That can't faked.

I believe that prayer has real power, but I don't have a fully satisfying answer to why healing doesn't ever seem to work that way. Maybe it would be too obvious if the case for God's intervention in human affairs could be placed on a "Before and After" poster.

Maybe God would rather be mysterious, and doesn't deal in verifiable miracles for the same reason God doesn't produce a weekly Heavenly Podcast giving us updates on life on the other side.

Of course, if God wanted to change the Heavenly M.O. and create a poster child for miracles, I would be glad to volunteer. I just don't spend much time getting my hopes up on that front. I get the feeling that God would rather work through me despite (or maybe because of) my limitations rather than just get rid of them. That sounds more like the God I know.

In the same way, I'd rather others pray for my well-being than my healing. And something about the other prayer just seems wrong.

Back when it was in question, God didn't answer my desperate prayers that I not have MS. It wouldn't be kind of rude for God to now answer yours on my behalf. It would be like God playing favorites. (But I'd still happily take it, of course.)

Seriously, though, I made peace with my MS before I was even diagnosed.  

After I went blind in one eye, I had an 8-day period where the doctors weren't sure what was wrong with me. I spent much of that time praying that I would be diagnosed with Lyme Disease or Lupus, something that was (perhaps equally?) awful but at least, based on my initial research, appeared more treatable and predictable.

God didn't answer that prayer, at least not in the way I wanted. Instead, the day before I was diagnosed, God let me know I had MS, but that it was going to be ok.

I had a neurologist appointment on the afternoon of November 4, and I remember freaking out over the idea that I might be diagnosed with MS to the point that I was unsure if I could get in the car and drive to go to it. My blood pressure was so high at the doctor's office they had to re-take it three times before I calmed down enough that they would even proceed with the appointment. 

When the doctor told me my first MRI was inconclusive and she wasn't ready to diagnose me, I felt the weight of the world lift off my shoulders. I had gotten a reprieve from a life sentence.
  
But the more I researched over the next six days, the more it sounded like what I had was MS. I did a spinal MRI in the meantime to check for any signs of the disease there, and as I was driving home the night before my follow-up for the results, I got a sign of another kind. 

I was flipping through the radio stations, and as I pulled into my house I heard the chorus of an old hymn. It was the same song--"I Surrender All"--that played when I became a member of a church for the first time as an adult, and it played again the next time I did so in a different city. It played the Sunday after I got engaged. It even played at a different church the Sunday before my brother got cancer, and the Sunday after I got the job offer to move to California.

We had my niece sing it at our wedding 14 years ago because it always seemed to pop up at big moments in our lives, and the trend has continued. I've never heard it play at church once in my adult life without some other life-altering event attached.

It always feels like it is God's message that I'm not doing this life alone.

It's an old song, one that doesn't play on the kind of radio stations that I listen to, but its chorus  had been worked into the chorus of a more contemporary release I happened to flip past. When I heard it, I started crying.

In that moment, I knew then that my prayers to avoid MS weren't going to be answered, but that God wanted me to know I hadn't been left alone.

For whatever reason, MS was part of the plan for me.

So today, I pray for a cure for everyone. I pray for a slow progression. I might even pray for a certain symptom to subside. But I don't ever pray to be magically healed.

God and I already had that conversation, and I respect its outcome.

The next day, I sat calmly as the doctor told me I had MS. Unlike six days before, this time the diagnosis felt ok.

I didn't avoid the disease as I had hoped, and I haven't been cured as others have prayed, but maybe I got something better.

I got a message repeated that I wasn't in this battle alone.

And so far, that's been enough of a miracle to keep me going.  

Wednesday, April 4, 2018

My Spring Break From Hell: Haunted Denver Hotel Edition

It's spring break time, and while some people are out making new memories, I'm still haunted by a spring break memory of my own. And I mean that a little more literally than I would prefer.

Because during my spring break in March 2000, I was quite literally haunted.

It all started on a Saturday morning and my law school friends and I overslept and missed our return flight from Vegas. Or technically, you might argue it all started the night before, when we out too late having so much fun that it caused us to miss our flight home the next morning. We had all come in on different flights, and I originally considered myself lucky to fly on out on standby to the very next flight out to Denver, where I was supposed to connect, while my friends were routed on a couple differing connecting flights to get back home to Nashville.

I got to Denver smoothly, and then my luck promptly ran out.

Consider:

I had missed my original connection when I missed my first flight, so I was getting out of Denver was dependent on catching another flight home on standby;
All the flights were booked solid for the rest of the day;
My luggage, however, was checked all the way to Nashville as though I would make it on the next flight from Denver on standby, so it flew home without me (this was before 9/11, so that could happen back then);
The Denver airport had just opened and didn't have many restaurants or services yet. It was built out in the boonies and there were no other business nearby;
I had exactly three dollars in my pocket.

All of the above meant that when the last flight back of the day back to Nashville departed, I was stuck in a random city with no clothes, no transportation, and no money. I went to ground transportation to find a hotel that had a free airport shuttle so that I could get some sleep and try again tomorrow for a flight with room to fly me home standby. This was before the days of Uber, so it was my only method of getting too and from the airport. I called numbers for advertised hotels until I found a Ramada that could come get me, and it took me on a drive that seemed to take forever, which was only fitting because it was taking me straight to Hell.

It did, at least, stop at a Wendy's along the way to let me blow my remaining three dollars on two items from buy the dollar menu. I was about to enter the Gates of Hell, but at least I did so with a chicken Cesar salad in my belly.

I got to the motel (definitely not a hotel), and booked a room on my credit card. I got ready for bed with about 80 cents left in my immediate possession. I had to use the plastic water cups to store my contacts, because my toiletries were in Nashville inside of my suitcase.

I was exhausted and miserable.

To my considerable dismay, when I laid down and tried to go to sleep, I started hearing noises in the bathroom. It sounded like someone was taking the lid of the top of the tank in the toilet and moving it around.

I told myself it was just water running, and I was mostly convinced of that explanation, but whatever was causing it, it was making too much noise for me to sleep. I went into the bathroom to see if I could fix it.

Of course, the noise stopped when I got inside, and there was no obvious problem inside of the lid. So I put it back on and tried for bed again, and the toilet went back to rattling as before. I tried to sleep through it for about half an hour without success, at one point thinking that I might have heard the bathroom sink turn on. I was a little bit frightened by the sound, but mostly just annoyed by the faulty plumbing in the room, since it had been a long day and I really needed some sleep.

I tossed and turned having the occasional concern about the weird noises from the bathroom, but mostly I just tried to ignore it and get to sleep.

Then I heard footsteps. I heard someone walk from the bathroom, right in front of the bed, to the other side of the room.

I jumped up and raced to turn on the lights by the door. I hadn't checked behind the shower curtain when I went to the bathroom, or when I had checked in, and I surmised that someone must have been hiding in there the whole time.

I was not in the mood to deal with this game, and I was in fantastic physical shape at that point in my life, so I was ready to take down whoever I found. With adrenaline pumping and anger boiling, I turned on the lights and turned around.

There was no one was there.

Had I a car nearby, if Uber had existed, or if I had cash for a cab, I would have gone to a different hotel at that moment.  But I was out of options, and the hotel shuttle didn't start running until the next morning, so I was stuck. Stuck in a room where the bathroom rattled and I heard invisible footsteps. I would have rather there been an actual person inside of my room.

At least then I would have had an explanation and proof that I wasn't crazy, at least as it related to the footsteps.

The rattling noise got slightly better after I heard the footsteps, which I suppose makes sense because whatever was inside the bathroom had finished and walked over by the window. After another hour or two of relative calm, I finally got a little bit of sleep.

I had a dream that night about two otherworldly creatures with grey skin and glowing eyes that were coming after me and destroying everything in their paths. It was one of those ultra-realistic ones where you feel your emotions vividly as you're dreaming and it seems real even after you wake up.

When I did, it was still dark outside and I was positive that between the nightmare, the footsteps, and the bathroom sounds, there was something very evil in my room.

I told it to go away, in my best exorcist voice, which I learned in my Southern Baptist childhood, and I might have awakened my neighbors (assuming my visitor already hadn't) in the process. The whole scene may have sounded either frightening or ridiculous to anyone who heard (or to my current readers, I suppose), but the room felt a little calmer on the other side.

I laid back down and got fitful sleep for the next hour or so until it was close enough to morning to shower, put back on the same clothes I had worn yesterday, and wait on the first shuttle of the day back to the airport.

When I got there, my airline (sadly, it wasn't Spirit Air) told me there were two flights out that day to Nashville. The evening flight was oversold by two seats already, although some of those people might miss connections just like I had the day before. The morning flight was full except for one upgraded seat that it could sell to me, but it was too fancy for me to take on standby.

The seat would cost $750, and I had about $1000 in my savings account.

I debated the cost of another night without clothes, toiletries or cash, and an airport shuttle to a motel that might or might not be haunted. I pondered the cost of missing classes the next day if I didn't get home, and wondered at what point the Nashville airport would stop holding my luggage. I worried that my cell phone battery was getting low, and I had no charger with me (this was back when chargers were individualized to their phone, so I couldn't just walk in to the airport book store and buy a cord that way you can today). I considered the cost of blowing what amounted to my life's savings and the shame I would feel for blowing over $800 extra because I missed my original Vegas flight by about 10 minutes.

I weighed all those factors, and then I concluded that no amount of money or shame outweighed the misery of spending another night stranded in Denver as a haunted homeless guy.

I bought the seat and flew home to Nashville, got my luggage, and met my friend Chris at Cheeseburger Charlie's just in time for the NCAA Tournament Selection Show.

Sometimes I wonder in retrospect if maybe I was just so exhausted that my mind starting playing tricks on me that night. Perhaps it was, but regardless, I slept in my own bed that night never having been happier to be home. 

I went to bed early and made it to class the next day. The thing in my hotel room, thankfully (for me at least), stayed behind.

And I still think these were the right decisions for both of us.