Monday, December 12, 2016

Dear William (88 months)

Dear William,
Today you are 88 months old. I think. I skipped writing the last couple of months.

This is in part because I am busy. But mostly because, I guess, I don't think I have anything wise left to say.

We've continued with the very expensive and time-consuming dyslexia tutoring.

Q and U stick like glue, and other fun things from the Orton-Gillingham method.

I still don't know why, for the love of god, the education system can't just do this with you in school.

You won a "major award" at the November assembly for being "hard working" and "committed to learning," or something vague like that.  All the kids earn an award once per year. These people don't know the half of it, how hard you work and how committed you are to learning. Puh-leeeeeeeze.


Oh, we had the election since I wrote last, too. When you woke up on November 8th, your face and eyes were bright and shining, and you said, "It's Hillary's big day!"

Hillary lost, all of us lost.

We can stand and fight, for whatever that's worth. Or we can run and hide.

My first instinct, as always, was for campfire.

Eventually we came home, and there was snow.

We had vegan Thanksgiving with friends, then put up a Christmas tree.

On ne voit bien qu'avec le coeur. L'essentiel est invisible pour les yeux.

To be quite honest, these days, I am surprised that the sun still rises.

William, I will continue to do everything I can for you, no matter what happens next. I am so glad that you are so much braver and stronger and wiser than me.

Love always,

Monday, November 28, 2016

Our Nausea

After the disaster that was Javelina, I thought I might have to give up running ultras.  It's been more than 4 years of this-- the nausea, the vomiting. It was no longer how I wanted to spend my life.

"We just need to get your stomach figured out," Rob insisted.

I wasn't as optimistic. All the reasonable, rational, realistic things have not worked. I don't know what else to do.  I wear anti-nausea wrist bands and take ginger pills, I've tried every possible electrolyte drink and tablet, I've tried gels and real food and liquid-only and high-fat. I feel completely out of ideas.

But Rob has approached this stomach-sorting thing as a kind of science. We'll continue to try different things until we find something that works.  We're not yet out of options.

On Sunday, I left to go run 20 some miles at Lory State Park, and Rob said I couldn't just do the same-old-same-old (Nuun and peanut butter pretzels, which hadn't worked for me during Javelina)-- I needed to make this run count by trying something different.  He suggested I give Tailwind another shot, because even though I have thrown it up before, in theory it seems to be the exact thing I need (a liquid source of calories and electrolytes). He said we could try diluting it a lot, so maybe the taste wouldn't bother me (yes, I think even the "unflavored" version tastes disgusting).

I grudgingly agreed.

I felt terrible from the get-go on that run (after many days of not sleeping or eating properly), and Tailwind did not make me feel any better.  It was all I could do to swallow that wretched stuff instead of gag it up or spit it out.  I don't understand why people like Tailwind.  It tastes exactly like the suero a pregnant Chilean girl gave me after I'd been throwing up for 2 weeks with The Vortex in Nicaragua.

I also took Endurolyte tabs during the run. For the past several years, I haven't taken any salt tabs at all, and Rob thought that this might be part of my problem. At Javelina, I took S!Caps, which are super concentrated, and maybe made the electrolyte imbalance worse. Endurolytes seemed like they would be a nice middle ground.

In addition to about 100 calories of Tailwind, I force fed myself ~500 calories of Wild Friends nut butter and peanut butter pretzels as I ran.  This is the most I've ever consumed during a slightly over 4 hour run, but still lower than the 200-250 calorie/hour recommendation that many ultra runners ascribe to. I've long since maintained that I can get by on 100 calories per hour (or less even). Rob doesn't believe this is true.

My legs held up fine during the run, but my stomach felt awful and my mind followed in a downward spiral. I swear that the Tailwind and Endurolytes induced nausea, because I wouldn't normally have been sick during a 20 mile run in cold weather.

I took a ginger pill after I got home just to survive, but the nausea returned later in the evening when Rob got the great idea to watch the "new" Jason Bourne movie that neither of us had seen yet. By just a couple of minutes into the movie, I was reaching for an emesis basin and wanting to gauge my eyes out I was so nauseous. It was like the time, more than 15 years ago, when my friend Jarrod had to carry me out of the theater during the Blair Witch Project because the shaky camera made me so sick.

I laid face-down on the couch and covered my head with a pillow, and Rob described the movie to me. "Now Jason Bourne has jumped into a car and is driving away," he said.

"What kind of a car, like a sedan?" I asked.

"Yes, a sedan. The bad guy has stolen a swat car and is chasing him."

"You mean the guy who was trying to kill him earlier?"

"Yes, that guy," Rob said.  "Now Jason has jumped the median and is driving the wrong way on a very busy street. The bad guy just plowed into 20 parked cars."

I felt like I was dying of nausea, but I laughed. This might be the only way I can watch movies, especially ones that involve a lot of shaky camera action. Movies make me sick all the time. From now on, I will just close my eyes and have Rob narrate.


When the movie ended and I managed to drag myself up to bed, I was still musing about this nausea. Rob asked me if the way I felt when watching the Jason Bourne movie was the same way I felt when I get car sick. I said yes.  He asked if it was the same way I felt when I get sick while running a race.  I said yes, now suddenly connecting the dots in my head.

All of a sudden I realized-- what if it wasn't about getting behind on eating and drinking during a race and then messing up my electrolyte balance or running out of fuel? I had always assumed that I slacked off on nutrition and hydration first, and the nausea followed after.  But what if the nausea was what started it all off? What if I get motion sick just from running, and then my queasy stomach won't let me eat or drink anymore?

It started to make a whole lot of sense. I've suffered from severe motion sickness my entire life-- in boats, planes, trains, buses, and cars, even while riding a bike. It seems reasonable that whatever causes my motion sickness would be in play while I'm running as well-- especially on trails where I'm constantly watching the terrain undulate and the rocks and roots rise and fall beneath my eyes.  It makes sense that I felt even worse after dark at Javelina.  The heat was less of a factor, but the bobbing headlamp against the darkness of night kept me throwing up. Maybe it even makes sense that in almost every ultra I've ever done, the nausea hits me around the same time-- 7 to 8 hours into the race, or somewhere between mile 35 to 38.  Maybe my inner ear has the power to fight off the sensory onslaught of jagged terrain for that many hours, and then it just snaps.  At least, that is how it seemed to happen at Javelina. Everything was fine until all of a sudden *bam* the nausea slammed me without any warning, even though I thought I had been doing a relatively good job of eating and drinking. It was after the nausea hit me that I shut down on my nutrition and hydration.

So there it is, I think I've figured it out.  It's not about calories or electrolytes. It's just my motion sickness, for which there is no cure.

I'm trying not to feel abysmal about this, but I kind of do.

Rob asked if it would be possible to take motion sickness medication during ultras, like Dramamine, but this would not be a solution. To say that Dramamine makes me "drowsy" is a vast understatement. It makes me catatonic for days on end if I merely lick a tablet.  All of the various motion sickness products have the same side effect.  They do make a "non-drowsy" version of Dramamine, but it is just a ginger pill (less concentrated than the ginger pills I already take) with a gelatin coating. That wouldn't be an improvement, even if I was willing to consume gelatin (I'm not). I did think that my vegan ginger pills offered me some relief during Javelina, it was just that I stopped being able to take them because the capsule is so big and I would gag on it when I tried to swallow.  I've looked around to see if I can find any ginger supplement that concentrated (I'm talking 1,000mg of ginger here) in an easier to swallow version. I haven't been successful yet.  But what I did try today was actually opening up a capsule and dumping the powdered ginger into a glass of water. It didn't taste completely terrible. Granted, I wasn't currently nauseous, but I had no problem drinking it like that. The thing I am actively clinging to at the moment is that maybe I could empty a ginger capsule into my water bottle during an ultra, and possibly survive to the end without nausea. Or maybe there is something else out there for motion sickness that doesn't cause drowsiness, dizziness, blurred vision, etc, as a side effect. I guess I'll keep looking, or else, limit myself to races I can finish in 8 hours if I want to do it without getting sick.


Thanks for reading.

Friday, November 4, 2016

Part 2: How I got off the boat at Javelina 100

Continued from Part 1: Selling my soul to get to Javelina.

I didn't come to Javelina 100 from a place of great strength. There were the preceding months of injury, and then, the wearing down of my soul as I fought to make this world (or at least the education system) a habitable place for my differently-abled child.

Of course, we all reach the start line having overcome obstacles. I don't think that mine were any more insurmountable than those that others faced. But I knew going into this that I had not handled it well. I was angry. I felt like I needed to own that emotion, that maybe it was a stage I needed to go through.  I hoped that my anger would be an asset in this race, that I could use it as a powerful fuel, and that I could just keep holding on to that razor thin edge instead of snapping and losing it entirely.

My knee hurt as we pulled into Phoenix, and my ankle hurt too.  But we found Christina in the parking lot of packet pick up, and at that moment, I knew everything would be okay, no matter what the outcome. She was the reason I was here, she was why I had gotten this far.

Thank you, Christina and Angela.

After a sleepless night, I was lucky to find Christina again at the start line in the dark of the pre-dawn morning, with about 600 of our closest friends.

Angela, you are with us too.

Christina, I meant to tell you something before the race and completely forgot: "This is your day."
I didn't even know when the race started.  I just noticed that all of a sudden Christina and I were moving and there was already at least a minute on the clock by the time we got there. I started my watch and ran about 10 steps.  Then we came to a complete stop. There were a lot of people ahead of us.

That moment at the start line when anything is possible.

The race started on a narrow trail, and because it was so crowded, the going was slow. The first mile took me over 18 minutes, which was about the same time when it got light enough to turn off my headlamp.

Christina and I stayed together in the congestion for a couple of miles. Then a woman passed me, flitting effortlessly up the trail. I decided I'd had enough of walking in the conga line. I went with her.

As I talked with my new friend, I relaxed a little. One thing I noticed (but cannot explain) was that all of a sudden, my knee didn't hurt anymore.  This was an asset.  I also noticed that once we got to the "technical" section, I actually didn't think it was so bad. Maybe living in the Rocky Mountains had done me some good after all. Asset.

But what I did notice was that my ankles hurt, both of them. The one that had been injured and the "good" one as well. I didn't know what to make of this, especially so early in the race.  I would have to find a way to make it manageable.

Around 10 miles in, we reached the halfway point of the loop and the aid station at Jackass Junction.  It was so crowded. I lost a lot of time standing in actual lines just to get a turn to refill my water, use the porta potty, find my drop bag, and get ice for the tube sock I was wearing around my neck as a cooling device. I took a salt pill and hoped the runners would start to spread out soon.

It was mostly downhill back to headquarters, and before I knew it, I had completed the first loop.

Drop bags at headquarters. 

Headquarters was crowded as well, but there was more space than at Jackass, plus I had Rob to help me navigate and get my things for me. He filled my pack and tube sock with ice, while I fumbled around my drop bag for ibuprofen. The pain in my left ankle was getting bad. I mean, it wasn't as bad as when the injury had first occurred a couple of weeks ago-- that had felt like an alien was trapped in my lower leg and trying to burn its way out with a red hot poker.  This wasn't to that point yet.  I stretched and rotated the ankle as I downed an ibuprofen.  I took another salt pill. I noticed again how terrifyingly hot it was becoming, so I took a ginger pill for good measure-- anything to keep the nausea at bay.  I guzzled 2 dixie cups of ginger ale, then loaded up on Fritos, salted potatoes, and more peanut butter pretzels.  It was time to go out for Loop 2.

I didn't invent the tube sock of ice around the neck, but I sure appreciate whoever suggested it. That was brilliant.  Also, apparently, I brushed shoulders with Rob Krar as I was exiting headquarters, but I didn't even know it. He wasn't running, he was there as either spectator or crew.

I noticed that on Loop 2, everyone was walking. It was hot, yes, probably nearing 100 degrees, and we were only about a quarter of the way into a hundred mile race, and we were going uphill.  But walking, really? Was it necessary? As the ibuprofen kicked in, I felt great. The salt and ginger were keeping my stomach at bay.  The caffeinated Nuun had given me wings.  I didn't want to walk.  That would make it take longer between aid stations, and refills of ice and ginger ale. It seemed better to just keep going.

I tried to do the best I could on hydration and nutrition.  The tube sock of ice was a life saver for keeping me cool, until two of the aid stations (each of them about 6-6.7 miles apart) were both out of ice. I felt bad for the volunteers, who looked at us apologetically, but seriously, I don't know how they managed to have any ice on this course throughout the day. It was so hot. We'd been lucky to have ice at all.  

I didn't notice that the heat was getting to me until I gagged on salt pill at Jackass around mile 32. I tried three times to get one down and never could. I eventually gave up and just kept moving.

By mile 37, I was nauseous.  The most important thing, I thought, was to get it under control and not panic.  But this was hard to do because my ankle hurt so bad. Negativity spiraled me downward.  I told myself to just hang on 5 more miles. Rob would be there at headquarters, and he would take care of me, and everything would be okay.

At headquarters, I gagged on two more salt pills. "Just put some water in your mouth and do this as fast as possible," Rob said. I managed it on my third try, but it felt like death and I started to cry.  I needed to eat but I couldn't eat. The best I could do was ginger ale.  I had covered just over 40 miles. How on earth was I going to go another 60?

Rob handed me my recharged headlamp, and I put it in my pack. The sun would set in 2, maybe 3 hours.  Then it would be cool, and the nausea would go away, and I would be able to make up for these lost calories.  All I had to do was finish Loop 3, and then Rob could pace me the last 40 miles.

I got some vegetable broth at the first aid station out. I knew it didn't have much in the way of calories, but at least I could keep it in, and maybe it would restore my electolytes enough so that I could eventually eat and drink again.

I ran with Carrie for a while, and Zach G. I felt better talking to them. I still hadn't eaten, but happy tears formed in the corners of my eyes. I had ridden the wave. I was going to make it.

I saw Christina and stopped to hug her. I was so proud of us for doing this, I was so happy.  Zach Bitter flew past us at that moment, on his way to winning the race and setting a new course record. He had smiled and told me "good job" each time he'd met me on the loops. He'd done that for every single participant out there, still managing to run around an 8 minute pace for a hundred miles.

Shortly after mile 50, it was dark enough that I turned on my headlamp. This is what I had been waiting for all day. It would be cool again, and I would be able to eat.

I walked into Jackass Junction, around mile 52, in the dark.  It was the "party" aid station. Volunteers wore costumes, there was music and lights.  A volunteer asked me what I wanted, and all of sudden, without warning, I burst into tears.  I can't eat, I told him. I haven't been able to eat since sometime before mile 37.  Liquid. Liquid calories, not sweet.

They handed me broth.  I sobbed and sobbed. A lady led me to a white tent, where I sat down on a chair and continued to sob.  Then I started to shake. The lady brought me some oranges and told me that had helped other people who had been nauseous and sitting in that chair.  I tried the oranges but they tasted so bitter to my nauseated tongue.  I stood up, I wobbled.  The lady told me she didn't mean to sound nagging, but she didn't think I should go back out on the trail.  I said I was fine, but I was sobbing. She got me a baggie for the oranges, and I left, clutching them and the dixie cup of broth.  I couldn't stop crying, but I headed back out onto the trail.

At mile 55, I puked for the first time.  It was dark, and I apologized to the people around me because even at this stage in the race, the trail was still crowded.  The nausea lifted for a few moments, and I knew I would have a little window of time to get some calories and electrolytes in me, hopefully turn this around. But what? Nothing I had with me sounded appealing.  I did the best I could.  A mile or two later, I puked again.

Eventually, I came to Coyote, the last aid station before headquarters.  I was sobbing again. I asked them, was there anything they could give me that would take away this nausea. I was losing my mind.  It had been more than 20 miles of this.  I had been subsisting on sips of broth and water that whole time.  I had 40 miles left to go.  I couldn't stop crying.  One of the volunteers asked if I wanted her to walk with me back to headquarters, some 3 or 4 miles away.  I shook my head. I said I could make it and went on.

People cheered for me as I came in, and I wanted to scream at them to shut up. I was dying, I didn't want to be cheered. Rob found me and got me a chair by my drop bag.  I sobbed and sobbed and sobbed.

"I don't want to have to quit," I told him.

Rob had on his headlamp to pace me, and we left from the aid station as I tried to take a couple of sips of ginger ale. I didn't know why we were doing this. There was no way I could make it to the end. I was angry that people kept telling me I had so much time left on the clock. 14 more hours to go 40 miles, they said.  It didn't matter. I couldn't see straight. I was so nauseated I thought I would die.

I don't know how long it took for us to get back up to the aid station at mile 66, but I knew that was the end for me. I didn't know how I would drop from there. I was terrified that I would end up just having to walk back to headquarters the way we'd come. 

I couldn't tell what Rob was thinking. Was he mad at me, was he annoyed? Did he think I was being a wimp and just needed to get my shit together? Was he disappointed that he had sacrificed so much for me to do this, and now I had completely fallen apart?  He kept telling me that I had plenty of time left. He had me lay down on a cot, and I think he thought I just needed to rest a while so I could feel better.  But I was way far past the gone. Lying there, not eating or drinking, wasn't going to bring me back.  I couldn't even walk another step.  My mind had snapped, and I knew I'd fallen off of that razor thin edge I'd been clinging to when I started this race.  All I wanted, in the whole world, was to get rid of this nausea.

I'm not sure how long we were at that aid station--an hour, maybe two? I started to get cold and shake again. One of the volunteers told me he felt so bad to see me suffering like this that he would just take me back to headquarters himself. I nodded and kept telling him I was so, so sorry. He got his truck and I climbed in. Another volunteer asked for my bib number, and I said "432." She radioed my number back to headquarters, and I guess that's how you drop a race.

I had plenty of time to think, as I talked to Christina the next morning, and then during the long drive home. I was messed up, for sure, but I have been messed up much worse in other ultras and still managed to finish. Maybe it was because I still had so much distance left to cover when the nausea hit.  If you get messed up at mile 37 of a 50 miler, you can gut it out to the end. Maybe you can't if the distance is 100 miles. At least, I couldn't.

When all was done, I'd gone about 8 hours on only a few dozen calories.  My body was shutting down.  If somehow, I'd managed get some fuel in me, I think I would have recovered instantly.  I just couldn't do it-- my mind was gone, my gut was gone, and I couldn't come up with the strength to power through any more.

If you've known me for longer than 5 minutes, chances are you've heard me talk about how I had Hyperemesis Gravidarum while I was pregnant with Will. This is not morning sickness.  This is puke until you almost die sickness.  I lost at least 10% of my body weight and couldn't work I was so sick. Once I realized that it wasn't going away the whole time I was pregnant, I didn't know how I was going to live through it.  I didn't know how I'd survive one more minute of it, much less 9 whole months. At 12 weeks, I was prescribed anti-emetic pills to stop the vomiting, which mostly worked, but they didn't do anything for the nausea.  It was terrifying.  I thought I would lose my mind, and there was no way out.  Not one for minute did that nausea ever leave me. 

It felt like all those times, when I lived on Ometepe Island and got seasick on the boat back to the mainland. I would white knuckle it through those boat rides, clutching the railing until my skin was thin and pale, and I would vomit into a trash can as Lake Nicaragua swirled violently around me.  I would hold on, just hold on, for an hour and a half, or maybe two, until the boat ride was over.

Hyperemesis was that same feeling, except the boat ride was much longer, and no matter how much I wanted off that boat, I was trapped.  There was nothing anybody could do.  

I thought of all this, as we drove home through Utah.

I thought, maybe I've never really gotten over that. Maybe I never will.  I don't know. During hyperemesis, I had no choice, I had no options. But during Javelina, I did.  I could take something I had worked so hard to get to, made so many sacrifices for, and I could throw it all away.  But in doing so, I could get off the boat.  And maybe that's what I needed to do.

Thanks for reading.

Thursday, November 3, 2016

Selling my soul to get to Javelina

I sold my soul to the devil at least six times just to make it to the start line of Javelina 100.  Each time I sold a soul, I wondered if I'd had any left to get me to the finish.

Remember how I vowed, or maybe just hoped, that I wouldn't spend August injured after reaching a new mileage high in July (as has happened for the past 2 years)?  Right.  I got injured.

The sharp, shooting pain in my knee began 2 weeks after Howl, when I was trying to run this local event called 24 Hours of Towers. I had no intention of going 24 hours. But I did want to attempt Towers 3 times (1,700 feet of gain each ascent) because the most I'd ever done before was twice. My quads were still sore from Howl the whole time, but on my second Towers descent, there it was, bright and white hot, screaming, searing pain on the outside of my right knee.

There was no point in worrying just yet. Javelina was 2 months away. I would get myself down the mountain, and this would pass.

Upper right: This was Will's first Towers summit. He said it made him feel tired and proud and hungry. Lower Left: Me, smiling at the top of Towers, feeling good for the last time in what would be a very, very long time. 

It would not pass.

The pain was really only there while I was running. I would take a few days off and then try it again, and sometimes I would make it 2 miles before the pain returned, sometimes only a quarter mile.  I tried everything. Rest, ice, ibuprofen, KT tape, strengthening and stretching, rossiter. I made an appointment with a knee specialist who couldn't see me for another 2 weeks, at which point, I hoped the injury would just be better.  But the pain always came back. Sometimes I could manage as much as 6 miles, by running a half mile at a time with a quarter mile walk break in between.  This felt abysmal and terrifying. I was always waiting for those daggers of pain to return, and they always came back, at some point during the run. I stayed on a miserable 1/2 mile dirt loop right by my house so that at least when the pain started, I wouldn't have far to get home.

Days passed, weeks passed. I became a very unhappy person. It killed me to see other people posting their long, long training runs and happy smiling faces. I took a leave of absence from podcasting with my friends about our journey to Javelina.  I knew I had to accept that there wasn't enough time, I wasn't going to make it there.

School started again, both for Will and me.  One of the classes I had worked very hard preparing got canceled, because whoever was in charge of putting it on the registration website had forgotten to do so, and therefore no students had known about it or been able to sign up. I guess I should have made sure that other people were doing their jobs, but I didn't check until it was too late.  Unlike real professors, when one of my classes gets canceled, I just don't get paid.  Maybe that doesn't really matter. I get paid so little anyway.  I would have said my life felt like a joke, but really it felt more like a waste.

Second grade started off somewhat promising for Will, because he seemed to like his teacher, but it was only a week until he cried when he got off the bus and asked me, "Mommy, am I dumb?" The education system tests children to within an inch of their lives (sometimes even beyond that), and Will knew that he had been placed into the lowest "reading level" of his class.

"No," I assured him, referring to the two minute conversation we'd had over the summer that changed everything. "You are not dumb. You are dyslexic."

I'd given his teacher a full week into the school year, which seemed like enough of a grace period. It was time to find out what the education system could do for a dyslexic child, and I knew, even as I tried to hang onto a modicum of calm and strength, that I was doubling down for the biggest fight of my life.

What I found out, as I went into the arena, was that it is actually possible to black out from rage. Like, literally pass out from anger at the response you get from teachers and "reading specialists" who don't do a fucking thing for the 1 in 5 dyslexic children in schools. These people often don't even "believe" in dyslexia, and they just look at you, blankly, showing you test scores that assure you your child is "below average" and then suggest that you sign him up for an after school homework club.  Sometimes, as an added bonus, they stress the importance that you make sure he keeps up on his 20 minutes of reading each night--completely ignoring the fact that he can't read because he is dyslexic and they are doing nothing to help him. 

To say that this fight has taken a toll on me is a drastic understatement. For two years I've had to listen to elementary school teachers tell me that my child is basically stupid and they can't understand why he doesn't improve with more of the same. I had to find out on my own what dyslexia is, that my kid has it, and what to do to get him help. It has been a long, long, long and very expensive road, and I am only on the beginning of it. For several weeks this fall, there were nights I went completely without sleep, days I went mostly without food, and I became a husk of a person-- feeling like I was only keeping myself alive so I could continue this fight.  In every way, I am shredded and empty.  

Outside the tutoring center. We will spend thousands and thousands of dollars on private dyslexia tutoring (not to mention, an official diagnosis) because the education system doesn't have enough money to follow the law and screen for learning disabilities or provide Free Appropriate Public Education to all children, even though this is required by the Individuals with Disabilities Education Act. (A school reading specialist who hasn't been trained in the methodology that dyslexic children require is not Free Appropriate Public Education, but having someone called a "reading specialist" is apparently how they get around it).

Near the middle of September, Rob ran the Black Squirrel Half Marathon. After the race, I talked to one of his friends, who had also had an IT band injury, and he gave me the contact information of his physical therapist.  Her name was Teresa, and she used a technique called Dry Needling.  "I've never had an injury she couldn't fix," Rob's friend told me. And I thought, maybe this is it. Maybe I could still salvage the absolute shit show my life had become and make it to the start line of Javelina 100, the race I registered for last May when I thought that everything was going to be fine. I'd been injured for nearly a month, but I had six weeks left to train.  If Teresa could fix me right away, maybe I could make it, and maybe my life would mean something again.

I sent her a text. She replied. Her first available appointment was just a few days away, on that coming Tuesday, during the time when I had set up a meeting with Will's teacher and the school "reading specialist" who doesn't even know what the Orton-Gillingham method is. (Note: the Orton-Gillingham method is how dyslexic children must be taught in order to learn how to read. It was invented in 1930).

Rob offered to go to the meeting alone.

I sold my soul to the devil and told Teresa I could take the appointment.

Teresa lives in the mountains.  Way, way up in the mountains, like a 50 minute drive away from our house on the absolute edge of town, and she sees people in her home.  The last 10 or so miles of the drive are on a dirt road so steep that my Prius started rolling backwards at times.  She doesn't deal with insurance, you pay her in cash.  You sign a waiver saying that she's explained to you the risks of what could happen if she nicks an artery or nerve with the dry needles.  Each appointment costs more money than one of Will's very expensive sessions with his Orton-Gillingham certified dyslexia tutor.

And Teresa is worth every penny.

Sunrise on the long drive up to her house.

She spent nearly 3 hours with me on that first visit.  She figured out that my knee hurt because I have scoliosis. I've always known I had scoliosis and that my back is completely messed up, but what I didn't know was that this messes up my hips, which makes my piriformis pull on my greater trochanter, which pulls on my IT band, and I end up with pain on the outside of my knee.  She stuck needles in my piriformis so that it would relax, and she didn't hit any nerves or arteries.  It didn't hurt as bad as I expected, but nonetheless, I almost passed out. On one of the sticks, my muscle contracted so strongly that it bent her acupuncture needle.

The day after my appointment, I ran 5 miles.  And the day after that, I ran another 7.  All pain free.  None of this shitty half-mile run, followed by a quarter-mile walk.  I was running. For the first time in almost a month, I began to believe I had a chance to make it to Javelina.

My knee started hurting again that weekend, but I made another expensive appointment with Teresa for Tuesday. To hell with all the money we were bleeding out on dyslexia tutoring and physical therapy.  I would sell my soul to the devil six times over just to show up to the start line of this race healthy.

I managed a 27 mile trail run that weekend, 5 weeks before the race. I climbed up the thirteen switchbacks on Howards, and then I stood on Westridge, overlooking the mountains and Teresa's house somewhere below.  I sobbed.  I screamed.  I was so, so angry at what my life had become, at my meaningless PhD, at the future my precious child might suffer because the language processing areas of his brain work differently than that of neurotypical people. 

This is the place where I come to scream.

I made it back to my car at the trailhead almost 6 hours after I'd begun. I learned that there is a well of raw strength inside me that is far deeper than I ever thought possible.  I had eaten peanut butter pretzels during the run to keep up on calories, but I truly believed that if need be, I could run this entire race fueled by rage alone.

Every run after that was double digits. Every day. I went from zero to 50, 60, and 70 miles a week.  I reneged on my beginning-of-the-semester promise to myself that I'd use my time wisely-- develop other courses to teach in the future, keep on top of things in the professionalization workshops I was still in charge of leading.  All I did was run, and drive Will to his dyslexia tutoring (a half hour away) after school. If I was going to sell my soul to make it to Javelina, I would sell it all the way.

The family of Will's best friend invited him for a sleepover on the last night of September, and it worked out well for training.  I made Rob go with me to Horsetooth Mountain after I dropped Will off, and we ran together for 5 hours in the dark.  When most people worry about Javelina, they worry about running in the heat of the day.  I was worried about running in the dark, since I've had problems with nausea and migraines after too many hours of that bobbing cone of light from the headlamp.  Rob and I worked out the details of battery changes and pacing.  At midnight, we stopped for a minute to turn off our lights and look up at the Milky Way. It was October 1st, the day we had met 19 years ago.

19 years ago, I never would have dreamed that one day Rob would make me run up Horsetooth Mountain in the dark.

I kept running through two more weeks of big miles. My knee held up, and it seemed like a miracle. I gradually stopped worrying and waiting for the ever familiar stab of pain to return. I felt strong and invincible. Then, on what was to be a routine morning 20 miler, there was a sudden burning in my left ankle that I feared could only be explained by a ruptured Achilles. I managed to hobble home, but this knocked me down a dozen notches. It made me remember that no matter how good I was feeling, at any moment, the circumstances could change. If this had happened during the race, I would have had no choice but to drop.

A picture from that run.

I texted Teresa, but she was out of town. I panicked.  I gave it a couple of days, dosed myself up on ibuprofen, used my last pre-paid rossiter appointment, and applied massive amounts of KT tape. By sheer force of will, it held up for one more 82 mile week. 

During my last long run of this training cycle, it was 34 degrees and raining. Of all years, this year in Colorado, winter had already begun. This wasn't the best set up for attempting a hundred mile race in the Arizona desert, but it was the best I could do. I reasoned that if peanut butter pretzels and rage could get me through the heat of the day, at least I would be well prepared for the cold of the night once the sun set.  It was time to taper.

Last long run out at Lory

I tapered as hard as I had run. My body was completely beaten up. I'd accomplished everything I'd wanted to during training, but it had been so compressed due to the time I'd taken off for injury.  I was ragged, hungry, and jagged skinny.  So many other areas of my life had been lacking in attention just to get in the miles, keep up the fight as Dyslexia Mom.  My ankle was dodgy at best, and I ran very little during the last two weeks before Javelina.

Pineridge trail, if I squint and add a filter, it looks kind of like the desert.

On the Monday before the race, I wanted to do one more night run and try out the spare headlamp (i.e., the one I'd use only if something goes terribly wrong with my real headlamp).  I felt so terrible on every step of this run. I couldn't quite figure out why.

And then, there it was, the sharp, shooting pain in my right knee. 

I made it home, but I completely panicked. It was too late now to try to get in to see Teresa, or another PT, before we left for Arizona. All of this, all of this soul selling, only to be back in the very same place with the very same pain in my knee. Why did this keep happening to me? Why couldn't I just stay healthy?

Rob and his friend Stephen tried to calm me down. Pre-race jitters. It happens every time. How many races have I run, lining up on the start line with a nagging injury, even a stress fracture, and once the gun goes off, everything is fine? All of them, almost all of my ultras I have run with an injury.  This too would pass. 

I packed my bags like this was still going to happen.  After all, the entry fee had been paid months ago.  Rob's dad had already driven 1000 miles here to take care of Will while we were gone. There was nothing left to do but show up and hope that I could run through 100 miles of pain.

We left for Phoenix. Every time we got out at a rest stop or gas station, I walked around and my IT band snapped, my knee hurt. My ankle was marginal at best. I thought, you know what, I give myself maybe a 10% chance of finishing this thing.  It had happened-- I'd sold every possible soul just to get to the start line, and I didn't have any left to get to the finish.

Thanks for reading. Part 2 to come.

Thursday, September 22, 2016

The 2-minute conversation with my son that changed everything

Since the moment Will walked into school on the first day of kindergarten, our experience in the education system has been horrifying and unforgivable.

I never realized, until then, that he wasn't like the other kids.  I mean, I guess I sort of always  knew, but I didn't realize, how really, really different he was.  And I had always thought it was a good thing, for him to be like this.  He just always seemed to come up with different solutions than other people would.  And he did things on his own time--which was often far later than the "experts" said he should-- and in his own terms.  

For example, he never crawled. Ever.  People told me that was my fault, because I must not have done "tummy time" enough with him.  Or people told me it didn't matter, he would crawl when he was ready.  But he never did.  We had hardwood floors when he was little, and one day--determined to get him to crawl--I put a blanket on the floor and set him down on it, on all fours.  I put a toy at the other end.  He wanted that toy.  He looked at that toy.  He studied that toy.  And then he took the blanket and pulled it towards him until he could reach the toy.

I thought, how creative.

Then I thought, he's going to have a tough time in school.

And he did.  Kindergarten was when I realized the other kids could do things he couldn't do.  The other kids all learned how to read in kindergarten and William didn't.  He was so frustrated.  His teacher labeled him as the "bad kid," and she treated me like I was some kind of meth addict because I was audacious enough to have a 5-year old who couldn't read.  By February, he cried every night and told me he hated school and he hated that everyone thought he was bad, and he begged me to homeschool him.  I don't even know where he learned the word homeschool because I'd never used it around him before.  My last conversation with his teacher ended with her crying, and not too long after, she quit her job.  I don't know if I had anything to do with that.  I no longer regret it if I do.

I thought, the education system is ridiculous.  Teachers have the emotional maturity of middle school mean girls who couldn't think of anything better to do with their lives.  Common core is bullshit.  These people are making way too many demands of little children.  William is a whole year younger than most of the other kids in his class, because we started kindergarten "on time" (he turned 5 just a week before the first day of school), and so many other parents wait until their kids are already 6, so that, I don't know, they'll be the biggest, toughest ones on the football team by the time they get to high school.  Parents are ridiculous.  

I thought, William will learn to read when he is good and ready.  Why should I expect him to read at age 5?  He's never done anything "on time." Recall, he never crawled.  He didn't walk until he was 16 months old.  He didn't talk until after he turned 2.  But he walks and talks just fine now.  He will read when he is ready to read.

On the last day of kindergarten he got to pick out a book to bring home with him.  He chose a very long book-- a chapter book-- about the Apollo 11 mission to the moon.  We read it to him when we celebrated the beginning of summer by camping out in our back yard. There was a full moon that night, and we looked at it.  William began to love space.  We went to the library and checked out every single book they had on space.  We read them again and again. William learned so much.  I learned so much.  We built models of the solar system.  We listened to podcasts about space. We watched videos about space. He could tell you every planet in the solar system, and how many moons each planet had, and all the names of the larger moons.  He could explain The Late Heavy Bombardment.  He could discuss the Kuiper Belt and Oort Cloud.  He could describe the life cycle of a star.  He worried about what would happen when our own Sun died (several billion years in the future).  He could tell you why Pluto used to be a planet, but wasn't considered a planet anymore.

I clung to his obsession with space. This was his thing. And this was my lifeline.  He was just a late bloomer. He wasn't a bad kid who failed to meet the basic expectations of kindergarten. He was a misunderstood genius.

He went to first grade, and his teacher wasn't a horrible person.  I volunteered in the classroom sometimes, but I had to stop that by the middle of the year because it killed me to see how far behind Will was compared to the other kids.  They whizzed through hundreds of sight words like it was nothing.  Will never got past the first page.  At his parent teacher conference, his teacher said, William really likes math--he would do math all day long if I would let him.  But his reading scores were very low.  Very very low.  The big words BELOW AVERAGE were all over his evaluations.  How could I argue with that?  Those were his scores.  How could I say, no you must be wrong--Will is a misunderstood genius.  There's no way he's BELOW AVERAGE.  How could I question his teacher on that, like I expected my kid to be smart just because I was high school valedictorian and have a PhD?  There it was, plain and clear, on the evaluation forms.  His teacher didn't seem particularly concerned about it, it was just a fact, he's BELOW AVERAGE.  Meaning, YOUR KID IS STUPID.  Here are the test scores.  These numbers don't lie.

All year, he was in a special reading program at school.  Sometimes he would get pulled out of the classroom when the other kids were doing fun stuff that he would have loved to do (like an engineering project to build a little house).  During the second half of the year, he wasn't progressing as far as they thought he should, so he brought home an extra hour of reading homework every night.  AN EXTRA FUCKING HOUR. OF READING HOMEWORK. EVERY NIGHT.  Maybe they thought it would take him 10 minutes.  But it didn't.  It took an hour.  He hated it.  He cried and got frustrated and we yelled at each other.  He would run and hide to try to get out of it.  But the teacher said he was BELOW AVERAGE and this extra homework was the thing he needed to learn how to read.  I had to sign a form saying that I had done the homework with him, in order to prove I was a good mom.  Because the default assumption when your kid is in first grade and can't read is that you must be a meth addict.  Will told me again that he hated school.  He hated first grade.  First grade was too hard, he said.  He hated that he worked so much harder than all the other kids, but he still didn't get it. He hated feeling like he was stupid.  He begged me to homeschool him.

The summer after first grade, I thought, okay.  We're going to figure this out.  I have a PhD, I teach college.  I am going to freaking teach my kid how to read. 

Except I couldn't.

Books that I'd already read to him, he could get through on his own just fine.  He memorized whole pages.  He could recite stories flawlessly. He could read, but only if he wasn't looking at the words.  Whenever we tried a new book, it was the inevitable breakdown of frustration and tears.

Camping was what saved us that summer.  We slept in our van in beautiful places on 25 nights between Memorial Day and Labor Day.  Out in the wilderness, there were no test scores or homework or elementary school teachers saying they were doing everything they could, he just wasn't that bright.  I wished it could be like that all the time.

On one of our trips to the Never Summer Mountains, we met up with a bunch of friends, and it was great. Will and the other kids ran and ran. We roasted marshmallows and made Smores.  The huge snowcapped mountains were all around us.  Will named the stars as they came out.

The next morning, I was talking with one of our friends at the campground.  She's a special education teacher in a different school district.  I was wary of her, because she is a teacher.  But she seemed almost as skeptical of the education system as me.  She asked me how William liked school, and I didn't sugar coat our experience.  I told her that it had made me so angry.  We sat in the van while the kids ran and I said, "I'm surprised they didn't hold Will back, to repeat first grade."

She cocked her head and raised her eyebrow and gave me an Oh, honey look.  She said, "They'll never tell you that.  They'll never hold him back.  If you think he needs to be held back, you need to go in there and demand it."

I was shocked.  I said I didn't know if that was the right thing to do.  How was I supposed to know if that was the right thing? They're the teachers, isn't that their job to determine his educational needs? What if I demanded that he be held back, and that wasn't what he needed, and it ruined his life? He was brilliant with knowing things about space, but he just couldn't read, at least, not when he was looking at the words.  Maybe reading was like walking and talking. One day he'd just be ready and do it.  Maybe, hopefully, that day would be soon.

She asked me about his reading.  She said, "Can William sound out words?" 

"Well yes.  Some words.  Like the words can and cat."

"But what about longer words?"  


"Can he tell apart b and d, or p and q?"

"Well, sometimes," I hesitated, because rarely was a better answer.

She looked at me and said, "Melissa, he's dyslexic." 

I shook my head, slowly at first, then faster.  "No," I said.  "It can't be. His teacher never said that.  He went to a reading specialist at school, and she never said that.  They just said he was below average and gave him extra homework.  Wouldn't they have told me if they thought he was dyslexic?"

She gave me the oh honey look again and shook her head.  "No, they will never tell you that. They aren't allowed to tell you if they think he's dyslexic.  They won't even use that word."

I broke down crying.  I thought of a student I had in one of my classes one time.  Early in the semester, he gave me a note from the campus learning center, explaining that he was dyslexic and was allowed to take exams at the testing center and have extra time.  He was a brilliant guy, really.  One of my favorite students ever. He could fix computers, and he was enthusiastic and engaged, and he could explain concepts so well in class.  But when I read his written work, even when he had extra time to finish it, there was something about it that made me think, he knows the answer to this question, he just can't write it down.  I wondered if that had something to do with dyslexia, but I wasn't sure.  I thought dyslexia meant you saw things backwards.

We got home from our camping trip and tried to continue learning how to read.  My mom had sent Will a package, with a book from the movie, Finding Dory.  Will was very excited.  Even with all his trouble reading, he has always loved books.  He loves looking at them and he especially loves books with very bright pictures.  He loves making up stories to go along with the pictures. Who cares what the words say anyway?  His stories are often so much more interesting than the printed text.

The book was for pre-schoolers.  It was mostly pictures.  It had one sentence on each page, maybe just five words long.  It was a book he had never seen before, and he couldn't read it.  Just. Could. Not.  I got a burst of hope when he successfully recognized the word "fish" on one page, but a page later, when he saw the word, "swim," he couldn't read it. His eyes darted around and looked at the pictures. I got frustrated.  "Look at the word, William," I said, and pointed to it.

"Ssssss..." he said, and his eyes darted to the pictures again.

"Look at the word," I reminded him.

"Sssss..." he said again.  Then, "Set," he pronounced.

"No," I shook my head, kept pointing to the word.  "Sound it out."  I was so frustrated.  Why couldn't he do this? Why didn't he try harder?

"Ssssss," he said.  "Smile."

Now he was just guessing, in hopes that he would randomly say the right word and this could be over.

"No," I said.  I felt like I was going to be sick.  This book was something pre-schoolers were supposed to be able to read, and he couldn't do it.

I thought about what my friend had said on the camping trip.

"William," I asked him gently, "what is it about reading that makes it so hard for you?"

He shrugged.  "I don't know the words," he said.

"But can't you sound them out?"

He shrugged again.

I pointed to the word swim.  "Can you see all these letters?" I asked.


"What are they?"

"S-W-I-M," he spelled out.

"Yes!" I said, encouraged.  "Do you know what sounds each of those letters makes?"

"Yes," he was confident.  And he made each of the sounds.

"Yes," I said. "Swim."

"Swim," he repeated, looking at the word and understanding it now.

"Right," I told him.  "You've got it.  So what makes it hard for you to sound out the word on your own?"

He didn't even need to pause to think.  "I can see all the letters," he explained, "and I know what sounds they make.  But when I try to read a word, I can't make the sounds go in the right order."

That was it.  Right there.

I had to let it sink in for a minute.

"Did any of your teachers in school ever ask you what made reading so hard for you?"

"No," he said.

Of course they didn't. 

"Did you ever tell them this, what you just told me now about the sounds and the letters?"


"How come there are some words you can read just fine, and other words are hard?"

"Well, the words I can read are the ones I memorized."

"Do you sound out any words?"

He shook his head.

"So all of the words you can read, it's because you've memorized them?"

He nodded.

"Your teachers in the reading lab, they said you had worked so hard and your reading had gotten better." At the end of the year he was still considered below average, but he was at least up to the lowest possible reading level for his grade.

"Well, sometimes the other kids read first, and I memorized what they said."

"And you just repeated it?"

"Yes," he grinned.

"So you tricked the reading teachers into thinking you could read?"

He grinned even wider.  "Yes."

I wrapped my arms around him and pressed my face into his blonde curls.  He smelled like stardust and sunshine.  Here was my kid, who never crawled, but figured out he could drag the blanket towards him so he could reach the toy.

I realized at that moment how amazing and beautiful his mind was, how he saw the world completely differently than I did, how most people do.  The education system had spent the last two years trying to turn me against him, convince me that he was stupid and it was my fault, but none of that was true.  What he described, using his own words, in those two minutes--that's dyslexia.  

I am not asking for advice.  In fact, please, do not give me advice.  If there is one thing I hate, and absolutely do not need right now, it is untenable solutions. 999% of my energy is focused on getting Will what he needs.  What I am doing might not be what you think I should do, but I am doing the absolute best that I can.

You can't "cure" dyslexia, but there are ways to manage it, so that these kids learn to read.  It hasn't been easy for me to find help for him, but I did, and it hasn't been within the education system. Dyslexia requires specific, explicit intervention.  The gold standard is called the Orton-Gillingham approach.  It isn't sophisticated or expensive to implement, and it has been around since the 1930's. It involves using multiple sensory inputs to help the brain make the kinds of connections it needs to in order to recognize words.  Plus, it's fun.  It makes reading like playing a game.  William adores his dyslexia tutor and the very expensive sessions I take him to twice a week until he learns how to read, or we run out of money.

I have not spoken favorably about our experience in the education system, and I know this may be shocking or hurtful to friends who are teachers.  In fact, many have assured me that what I've described is highly unusual--an example of a particularly "bad school" or teachers who are not doing their jobs.  This is not true.  William's school is consistently ranked one of the best in the district, and the district is one of the best in the state.  And these teachers are absolutely doing their jobs.  Nothing more, nothing less.  This experience is happening in every school, in every classroom across the nation.  

Research indicates that as many as 1 in 5 people have some form of dyslexia.  At Will's school, that means there are about 100 dyslexic kids (I'm pretty sure about this--I had William do the math).  These kids are being told they are BELOW AVERAGE, and they are going to the reading lab to work with reading specialists-- like Will does, now twice a week.  By law, this is what the school has to provide.  But the reading specialists are not trained in specific methodology for dyslexia intervention, nor do they use these methods.  Dyslexic children will never learn to read this way, but they may develop coping strategies that trick the reading specialists into thinking they can read.  This type of approach is called an RTI (Response to Intervention).  It exists so schools don't have to designate so many children as qualifying for special education, and it saves them money.  It exists so that schools can act like they're doing something, when they're actually not.  What it does is set up dyslexic kids to fail, and then blame them for it.

I could see through all that, and I found a way.  Other parents don't, and their kids don't get help.  Think about that. There are a hundred kids in Will's school alone who aren't getting help.  One of these kids might have become a research scientist who found the cure for cancer, if only he or she had been taught to read.  

During the first week or two of school this year, the children were tested and placed into reading levels.  Will told me that he was in the lowest reading level of his class.  "Am I dumb?" he asked me, shame tinging his voice.

"No," I said.  I hugged him tight and breathed in his stardust-and-lemon-cookie scent.  "You work harder than the other kids, and that makes you stronger."  I thought about the amazing connections that his non-neurotypical brain can make, and the way that he thinks about things and processes information completely differently than most people do. "You're smarter than the other kids too, because this stuff comes easy to them, but you have to work hard to find way."

The world needs people like William.  "You have dyslexia," I told him.  "And it's a gift."