Saturday, October 17, 2015

My Brother

a 3200 word essay

My brother was ill for almost his entire life.  In my fully biased opinion, a complete tragedy. I believe the trouble started when he was just eight years old.  I was four at the time, so I can’t recall much detail about how it all started, and since it was always a difficult subject to discuss with my parents, a lot of those details never came clear for me.  I don’t think it much matters.

What I remember was a frantic mother, just on the lucid side of hysteria, desperately trying to feed my brother orange juice.  Pouring it in his mouth.  Imploring him to swallow it.  Eventually rushing him to the hospital.  Then I remember it happening again.  I remember him being gone long enough for me to wonder where he was or when he was coming back.  Then he came back and I was assured things were all straightened out.  I was pretty shocked to see him rushed back to the hospital again.  None of it made any sense to me.

Eventually Mom explained to four year old me, best anyone could, that my brother had diabetes.  I learned the sound (if not the meaning) of the word “insulin” and understood that, as would seem the ultimate horror to a kid who’s four, he would have to have a needle EVERY DAY.  Mom and my brother both showed me that it was a short and skinny needle, so it really wasn’t too bad, and my brother could even give it to himself.  It was the bravest thing I’d ever witnessed. I learned the word “shocky” which was shorthand for describing insulin shock; a condition that makes diabetics catatonic when blood sugar levels get too low.  I witnessed a lot of insulin shock.

The five or so years that followed did not get any easier.  Far too often I watched a panicked mother doing the orange juice force-feed again, only to reprimand my brother when he came to.  Once he repeatedly pointed to a small table and asked me to hand him “that… thing.”  I asked him to be more specific but he couldn’t.  A nine year old me took everything off the table and asked him to point to the thing he wanted but he still couldn’t do it.  Next thing I did was tell Mom and she, once again, brought him back from another round of insulin shock.  My brother later explained to me that it was the box of Louden’s cough drops he wanted.  He knew they had sugar that he desperately needed, but he couldn’t articulate his thoughts and didn’t think to grab them for himself.  He felt bad that he had put me through that and apologized to me with a kiss on top of the head. It was the most sincere act I had ever experienced and I of course said “Eww!” and wiped it off my hair, but that was the day I started looking out for my older brother.

Hospital trips now were down to New York City.  We lived only 90 miles away but I had never seen it.  We went quite a few times in a six month span of 1977, but my trips consisted only of visits to New York Hospital.  In the food capital of the world, our meals were from whichever deli was closest.  For entertainment, I found a window where I could watch the tugboats emerge from under the 59th St. bridge, pushing barges up and down the East River, and I marveled at the sight of the aerial tramway, wondering exactly how far off the charts that level of fun must be.  And you can have your Empire State Building, Chrysler Building, Brooklyn Bridge... all good choices, but of all the great architectural icons to choose from that best represent the city of New York, for me it’s the glowing beacons and red and white stripes of the smokestacks of the generating station behind Roosevelt Island.  I’m okay with that.

It wasn’t all boring.  We got out to the Statue of Liberty once.  We only made it to the base because my brother was getting another headache.  With the notable exception of a screening back home of Star Wars Episode IV: A New Hope, those headaches got in the way of a lot of things.  They are what brought us to New York Hospital.

Mid-seventies medical technology could not diagnose the tumor that had been growing on my brother’s thyroid gland for several years.  It grew large enough to crush and pretty well cripple the pituitary gland.  It stunted his growth at age 13.  It both caused and complicated his diabetes because a broken pituitary can’t stimulate the other glands as it should, and those symptoms can lead doctors down a seemingly endless series of dead ends in an almost literal kind of skullduggery.  Where a typical diabetic would have adrenaline to boost energy during times of low blood sugar, my brother had no such functioning gland.  Doctors spent two days regulating my brother’s diet to keep blood sugar levels in what they thought was the ideal range, drawing blood every hour to be sure, but when the supposed ideal levels were reached, my brother would go into insulin shock.  The rest, I’m told, is in medical journals.

The tumor was eventually found and removed, but the damage was done.  My brother may have had a health plan he was supposed to follow, but he never did. I remember when I was 18, finding him unresponsive one morning and having to revive him.  As a teenager, seeing someone asleep at noon isn’t something you bat an eye at, but I had gleaned enough info over the years to intuit that such a thing was dangerous for my brother, though I wasn’t exactly sure why (it was too long to go without food.) It’s also pretty hard to tell the difference between sleep and catatonia.  Because there is no snapping out of it, the best result you can get just looks like sleep sitting up.  It’s an exercise in frustration on many levels.  I think about that moment a lot and I wonder how it would’ve gone if I hadn’t noticed he was downstairs asleep in his basement room.  I did whatever anyone would have at the time, but as the day went on I began to realize I actually saved my brother's life. I was stunned by that, but it was probably just another Tuesday for him.  It may have been another ten years before he really took some responsibility for himself in that department.  Luck, if you can even use that word, would certainly intervene time and again for him.

One thing he never suffered for was his love of life.  He played drums professionally. He loved the outdoors.  He loved cars.  He loved computers.  He thought those little miniature shrimp were amazing.  I'm saying he was into things.  His passion for and focus on his interests was so strong that he probably thought it could overcome his illness.  

When we were kids we did our best to ride our bicycles as if we had real, live, motorized dirt bikes.  I don’t mean we put our baseball cards in the spokes to simulate engine noise.  I mean we wore our football helmets, made our own ramps, held jump contests and organized races.  And Kevin may have ridden a ten-speed, but he only did it because he had well mastered the regular bike and now wanted to achieve the goal of shifting up and back through all ten gears while riding a wheelie, which he eventually did.  You could hear the celebration from indoors after it happened.

We were blessed with an ideal bike-riding neighborhood, including a natural set of jumps off the side of our quiet road that had varying levels of steepness such that you could pick the one that best matched your skill level.  Eric could build up such a head of steam, starting around the bend and out of sight and flying toward the steepest ramp, pedaling his long and lanky legs so hard you could hear the tires hum against the pavement with each turn of the sprocket.  Then he’d hit the jump and everything would go silent as we waited for the THUMP! of the landing. It got to the point where we knew it was a good jump or not just based on the length of silence between takeoff and landing.  A team of spotters would run out and mark the landing with a line in the dirt.  Then everyone would try to break that record but no one ever did.  And if anyone came close, Eric would just go out again and set the bar even higher. 

Eventually Eric got it so tuned in that he was now jumping beyond the landing area, and we assured him that the new goal should be to see if he could land it in a tree.  It didn’t take him more than three attempts and sure enough, he stuck the landing…  in a sapling with just the right amount of flex.  I guess I don’t know how he survived this without injury, but it’s not a kid’s job to consider these things.  Never mind that, the real problem we hadn’t considered was how to get a bike out of a tree. Whatever - typical day outside so long as it wasn't raining really hard.  

The point of that diversion is that this was the sort of activity that occupied my brother’s focus.  He wasn’t thinking about whether he should take another unit of NPH or Regular insulin, or even that he should probably stop doing this for a second and eat something.  He defiantly vowed that he would not spend his years being an obsequious, model patient.  Defiant of what, exactly?  My brother seemed bent on trying to convince his body that there was just no room in his world for illness, but he never came close to winning that argument.  By the time he had reached 50, though he had certainly grabbed much of what life has to offer (including gainful employment, marriage, and two kids) his health had deteriorated to the point where it was clearly calling the shots.  Defiance turned to denial.  Indefatigability met inevitability.  

Then cancer took our mother.  Two months later, my brother was gone, 20 days shy of his 51st birthday.  That marked the end of a real shitty year in which everything just kept going wrong, and for some godforsaken reason, every night it seemed there were gale-force winds.  I'd go to bed at night hoping for just a moment of calm from the world, but was greeted with relentless howling gusts.  They never stopped. It totally put me on edge.  I hated it.

A couple of months later I fell victim to an obvious yet totally unavoidable case of "life's too short" and began to think I needed to do some living.  One of my brother’s greatest passions was boating, and he loved it as much as anything he’d done. When he was gone, we talked about how much he loved it.  But he went most of his life without having one of his own.  He didn’t get out as often as he would’ve liked.  As the months passed, that started to feel like the kind of mistake I didn’t want to make.  I certainly didn’t have the passion for it that my brother had, but my parents had a boat a long time ago and they almost traded up for a bigger boat but they never went for it.  I always wished they had. After thinking about that bigger boat for 30 years, I knew exactly which boat I wanted to get. I’ve also lived next to a beautiful and pretty large lake for most of my life.  Maybe I should finally do this.  Because what if I don’t?  I set out to find that boat from 30 years ago.

The closest one I could find was over 200 miles away.  I was ready to go get it and experience the adventure of piloting it back home; a journey of over 500 miles by water.

I assembled a crew of four: Dan the Plumber, McGrath, my brother-in-law, and myself.  Dan had made a similar journey before and had the most nautical experience, was a competent mechanic, and a general alpha-male.  McGrath was a high school history teacher who had the right combination of enthusiasm and mellow to counteract Dan’s hyperactivity.  My somewhat risk-averse brother-in-law surprised us all by saying how a trip such as this was something he’d always wanted to do.  I contacted a surveyor in Massachusetts where the boat was located and awaited his report by phone.  It passed the sea trial with flying colors.  We were good to go.

In its day, the boat sold for $30,000.  Depreciation being what it is, I paid less than half that today, for a boat complete with two engines, heat/ac, a sofa, shower, galley…  Something that had for so long seemed unattainable suddenly became real.  We made the four-hour drive south, and I finally arrived at my new boat, which ran great; just as smooth as the surveyor had said.  We had provisioned it with enough food to be stranded at sea for quite some time. We were finally underway with a hazy, hot July day upon us, headed for Cape Cod Canal, dodging a channel full of lobster traps all the way.  What an unbelievable thrill!  I raised my glass and made a toast to my brother.  I knew he'd be loving this.

Dodging lobster traps on a hazy, hot day with the city of Boston on the horizon.

The boat lasted about four hours before we had a major malfunction.  We lost the transmission on the port engine.  And right on cue, the hazy skies darkened.  Rain fell and the wind came right at us.  For 90min, we made about 7mph headway in the dark, on one engine, dodging lobster traps and finding our way to the entrance of the canal.  We stayed at a marina in Sandwich, right near the east entrance to the canal, for the night.  They were closed so we just tied up to the fuel dock. I called my wife and apologized profusely that my plan had gone so wrong and that I had likely made a very costly mistake.  I felt so bad for having done this to her.  She took it well but I was probably pretty light on the details of what was likely to come.  I went back to the boat to sleep and the damned howling winds came back to blow salt air into my wounds.

Tied up at the fuel dock in Sandwich, MA

The next day we limped to the closest marina capable of doing repairs.  Peak season on the New England coast is not the time to ask to be squeezed in to the schedule, but the marina would be very happy to let me dock there for literally $100/day while they worked out the schedule.  Completely at their mercy with a broken boat 200mi from home, I pleaded with them to find some arrangement.  Five weeks later, the repair bill came to just over half of what I paid for the boat.  I think that’s a wrap on the marriage, people.  Thank you for coming.

Exiting Cape Cod Canal on one engine.

Looking back now, this was really the wrong attitude.  I should’ve laughed it off, thrown in a nice "Yarrrrrrrrr!" and chalked it all up to adventure.  You probably need to live above a certain financial threshold to do that, though, and I’m not quite sure I’m there.  In the end, it’s still only four figures. In the scheme of things...

Still not over it.

So we started the trip again, heading off from Onset, MA, this time.  And this time we made it about one whole hour before we decided one engine was running so rough we should stop and scope it out. We must've collectively brought 1,000lbs of tools on that boat.  But the engine was just too fouled to get restarted. Five weeks of sitting unused in the damp marine environment took it's toll on the ignition system. We needed to get back to the marina to buy some parts, and we called for a tow. The two-hour tow cost $750.  But alas, I was prepared with a Sea Tow membership. The tow was completely free.  Yarrrrrrrrr! 
$750 ?

We took care of the tune-up at the dock and headed back out.  Due to some sloppy workmanship on behalf of the marina, the transmission didn’t run nearly as smooth as when we first got it, but that day we made it all the way to New London, CT, “home of the world’s first and finest naval submarine base.”  Success.  It got off to a rough start, but for all its ups and downs it turned into one of the best days I’ve ever had.  We tied up at another closed marina and set off to find dinner, where we toasted the relative success of our first day that didn’t end back in the car.

Lighthouse at New London, CT

We had all showered and cast off before 6AM the next morning, before the marina was even open.  Everything was in our favor that day.  The seas were calm.  The weather was perfect, and we saw New York City in the middle of the afternoon.  We went around Manhattan and I took a photo of the smokestacks on Roosevelt Island, the 59th St. bridge, and today’s version New York Hospital, looking up from the very place on East River where I had watched those barges pass by so many years ago.  

Put a price on that.

We navigated out through New York harbor toward the Statue of Liberty, boats going in every direction.  Times Square on the water.  Finally, after five weeks of trying, we pointed the boat north toward home, the narrow Hudson River a welcome reprieve from the ominous expanse of the open ocean.  No matter how calm the ocean gets, the sheer vastness of it imparts a sensation that it could, at any moment, just decide to swallow you up.  But with railroads lining both sides of the river, the section of the Hudson passing under the GW, up past West Point and on to Newburgh, was arguably the most scenic leg of the journey.  We tied up at a marina directly in front of a nightclub at which, as luck would have it, my sister-in-law and her band were performing.  This was a spectacular day that ended with a stop very near my hometown, checking in with my brother’s family.  This is the journey I signed up for.

Interesting twist - that evening the crew wanted to push on.  With slackwater under the light of an August supermoon, and midnight temperatures in the low 70's, they thought we could make great time.  I thought it was just plain out of the question and, as captain, had to be the sole voice of dissent.  Coulda been a mutiny for sure, but I was afforded respect and we stayed for the night.  Thanks, dudes.

Within 30min of shoving off the next day we struck a huge submerged log and our week was done.  Startling for sure, but I was honestly unfazed.  We were within sight of a marina that happened to be about three miles from my Uncle’s house.  I’d made the trip by car to and from this town dozens of times.  I’m also insured for this sort of thing, and nothing short of the boat exploding into a thousand shards of fiberglass could make me look twice at this point.  This setback lasted only a week and we were back in business. 

The rest of the trip home went off without a hitch.  Up the rest of the navigable part of the Hudson, through the Champlain locks and onward home.  Not quite two more days on the water. I arrived home at 3PM relieved that I wouldn’t have to think about the boat anymore.


So… that didn’t really go like I thought it would.  I had that brief moment at the beginning there when everything started off so well and I raised a toast to my brother, knowing he would’ve been at his happiest if he could’ve been part of this.  But to be frank, much of the rest of the trip was just waiting for the other shoe to drop, which it never really did.  After another year living with the boat and continuing improvements, the nerves settled down and I began to enjoy it simply.

Now I just wish he could be here to enjoy it.

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