Saturday, June 10, 2017

Kettle Moraine 100 Pacer Report!

I didn't think he would really want me to go with him.

When he'd first mentioned running the Kettle Moraine 100, barely more than a week earlier, he'd said his parents were planning on coming up. I'd told him that if his parents didn't mind watching Will all night, I could pace him.  Runners would loop back through the start/finish area (where we'd be parked in the van) after around 62 miles, and they were allowed to pick up a pacer before heading out again for the last 38 mile out-and-back. I could leave with him at mile 62, or I could run down the road for about a mile and a half and pick him up at a trailhead he'd pass by at mile 70. Or when he passed that same trailhead again on his way back at mile 93.

"Interesting," had been his reply. I saw his eyes considering these possibilities, but ultimately he'd said that he didn't think he'd need a pacer. He'd decided to run the race on the assumption that he'd be running it alone, but since I'd offered and it would seem to work out, he didn't completely discount the possibility. "Let's say it's not Plan A," he said. If everything was going according to plan, he didn't think he'd need me.

How often does everything go according to plan when you're running a hundred miler?

We took off for the midwest, and when we arrived in Illinois, we ran together a few times on trails near my parents' home. I'd forgotten what midwestern trails were like. Rooty and muddy with constant little 100 foot climbs and descents. The soft ground felt delicious under my feet, so unlike the rocks and slippery sand I've gotten used to in the foothills of the Rocky Mountains. Maybe if I'd never left the midwest, I'd have been a halfway decent trail runner. Even so, as I ran with him, I realized there was no way I'd ever be able to pace him in a hundred miler. I would never be able to keep up. He so much of a stronger runner than me that even at the tail end of a hundred miles, he would still undoubtedly be moving faster than me on the trail. If I were to go with him in the race, it would only be in the case of a dire emergency, such as, he'd have to be walking it in for the last 38 miles.

The night before the race I think I slept all of three hours, and he didn't sleep much more than that. It wasn't too long after the start of the race that thunderstorms began. This was real, midwestern rain, the kind that dumps buckets of water on you for hours at a time. We don't get this in the foothills. I kept my eye on the lightning, wondering how close it would have to be before they called the race.

My in-laws came to the park and we drove to the Scuppernog trailhead, where we saw Rob for the first time at mile 31, 5 hours into the race. The rain was slowing down. He looked strong and had me refill his bottles while he ate pickles. We got to see him there again about 6 miles later.




The rain finally stopped for good, but the afternoon consisted of running through shin deep mud in oppressive heat and humidity. We saw him for the final time at mile 47. He had slowed a tiny bit. The wheels were still on, but I could tell that he was standing at the precipice of insanity. It was so unbearably hot. And humid. He had loved running in the rain. But these conditions--these were not Rob's time to shine.

Crew chief Will hands Rob a tube sock of ice for his neck.




He had initially predicted that if all was going well, he would make it back to the start/finish area (mile 62, where we were parked) around 6 or 6:30pm. Based on how he'd looked at mile 47,  I didn't expect him until more like 7 or 8. I hoped he would just take it easy in the heat and wait for the cool of the evening to come.

At first I made no plans to get ready. After all, my pacing him was not Plan A. If he did come through at 6pm, then that would mean things were going well and he didn't need me. Only if he was delayed by several hours would it become more likely that he'd want me to step in.

But by about 5, I decided that the responsible thing to do was to be ready for anything. I loaded my pack with everything I could possibly need for a long night of running, and I ate a few bites of questionable vegan pizza that had been in the van fridge now for several days. Yuck, that was a bad idea. My in-laws watched Will while I lay down for about 20 or 30 minutes for a power nap. I knew there was no way I could run the whole night on only 3 hours of sleep.

I had only just gotten up when I heard my father-in-law say, "Here he comes!"

No way. It was nearly exactly 6pm.

He looked wrecked. He got fresh clothes out of his drop bag and came into the van to change, spewing mud everywhere. I could tell he was in a great deal of pain. It didn't seem like he was firing on all cylinders.

"Do you want me to come with you?" I asked, as we struggled with the gaiters on his mud soaked shoes.

"I don't know. What do you want to do?"

His indecision was uncharacteristic.

"I don't care. I can do whatever. I'm ready to go with you now, or I can meet you at mile 70, or at mile 93."

He winced in pain as he tried to lift his foot off the ground.

"Yeah," he said. "Okay. Come with me. If you want."

I sprang into action. I had not expected this. I had thought the most likely scenario would be that he declined, no matter what state he was in. The second most likely scenario would be him saying I could maybe meet up with him at mile 70, if I wanted. I knew he was disoriented and in pain, but things must be worse than I thought.

I ran out of the van to tell my in laws I was going with him and to make a final check that everything was in order to leave Will with them overnight. I hugged Will. I made sure I had my headlamp and spare batteries in my pack, along with plenty of water, electrolytes and food. Did I have enough caffeinated Run Gum to get me through the night? No time to get any more. Rob was ready to go.

As we passed through the aid station on our way out, a group of volunteers and spectators cheered. "Hundred mile runner, heading out!" the race director called as more cheers ensued. "You're the pacer?" he asked.

"I'm the pacer," I said, much like Bohdi repeated I'm the pilot in Rogue One.

The RD gave me two thumbs up. "Go get 'em," he called, or something similar to that. I felt like a celebrity amidst the cheers as we left the aid station and headed back out onto the single track.

The trail was smooth and seemed flat but maybe was slightly uphill. Rob walked. We moved quickly, but I could tell he was in a lot of pain by the way he put his hands on his hip flexors and limped every time there was a slight incline. His feet barely left the ground. The roots became doubly dangerous for him at a shuffle. I knew we were in for a long night.

I also knew that we would not mention the pain. I would not ask him how he was doing, I would not speak of his hip flexors or raw, blistered feet. We would be like Gary Robbins and Jared Campbell during the 2016 Barkley. We had a job to do, and we would get it done. There was no room to give pain any power.

Rob began running again, moving at a decent clip. The hip flexors begged to be acknowledged, but we ignored them.

I thought, if the entire trail is like this--mostly smooth and flat--it will be a breeze.

"This is the only part of the course where the trail is like this," Rob said to me, even though I hadn't asked.

"Oh." I wondered what the rest was like, then.

After the first tidbit, we got to a roller coaster section of constant short, steep up-and-downs. I could tell by his labored steps that Rob's hip flexor did not like this.

We buzzed through a couple of aid stations, pausing only to get Rob what he needed (pickles, banana, water) and then moving on.

"We're not even to the Ice Age trail yet," he mentioned at one point, which was the closest he ever came to a complaint.

"We'll be there soon," I said, even though I had no idea where it was.

Sure enough, we reached a point that runners called "Confusion Corner" and it was around there that we turned onto the Ice Age trail. Narrow, rocky, rooty, single track. Gone were the smooth roller coasters of the first section. This was legitimate gnarl. But it was Wisconsin gnarl, so if you fell, you weren't going to go tumbling off the mountain. And in spite of the ankle-busting roots that littered the trail, the soft-packed midwestern mud made the descents far easier for me than the slick, sandy trails I run at home.

Darkness was quickly approaching by this point, and we flicked on our headlamps. Things got significantly more difficult for me as we lost daylight. The trail was harder to see. I was glad that Rob was stopping to walk so much, because if he'd been on top of his game, there is no way I'd have been able to keep up with him. I had some moments of concern during this section. We were still fairly early into the night, but the run no longer felt easy for me. I mean, my legs were fine, it was just harder for me to move on the rugged terrain in the dark. I had this underlying paranoia that Rob was going so slowly just so I could keep up with him. I began to wonder who was pacing whom. I had to remember that it was me pacing Rob, and I was the one who had to be strong and alert, no matter what. I realized this might be the only time in my life I could do something like this. If he ever ran a rugged mountain hundred, he would be way too fast for me. And if he ever ran a more gentle hundred, like this one, chances were that he'd be having a better day and still moving too quickly for me to be of any help.

We finally got to another aid station about 14 miles out. It was lively and the volunteers were enthusiastic.

"Can I fill your pack for you?" A volunteer reached to help.

"I'm the pacer," I said, Bohdi-like.

"We help pacers too!" She smiled as she took my reservoir to fill it with water. I went to the food table and engulfed some chips and guacamole. I hadn't been taking care of myself very well on this run-- not even pausing to refill my soft-flasks with water and Nuun. I'd been focusing on Rob at each aid station, but I knew it wasn't sustainable if I let myself get into deficit.

Meanwhile, Rob sat down for the first time since we'd set out. His face was gray. He looked completely wrecked. I didn't acknowledge it. I got him some chips, banana, and pickles. He picked up his better headlamp and some caffeinated Run Gum before we left. Just 4 more miles to the turn around point. Just 4 more miles and we'd be halfway through the last leg. Just 4 more miles... and we'd still have 18 more miles to go after that. It seemed daunting even to me, and I hadn't been running since 6am.

I think few people on this earth can understand what it took for Rob to stand up from the chair and walk out of the aid station.

"I'm cold," he said as we began hiking up a steep hill.

This was bad, very bad. It was hot out.

We extracted his jacket from his pack and he put it on as we continued to walk. Climb up the hill, step over roots.

The race, in addition to being a hundred miler, was also a hundred mile relay, a 100K, a 50K and a 38 mile fun run. There were a lot of people out on the course. And a lot of them were significantly fresher than someone who had already been running all day. I started to get annoyed with the traffic at this point. But I was the pacer, and I had to stay strong. I didn't say anything.

This was the moment of the the race-- probably about 76 miles in for Rob-- that I could tell there was a real, significant possibility that the wheels were going to fall off. He felt terrible. He was exhausted. Thunder and lightning threatened again in the distance.

He wasn't even remotely close to the point at which I thought me might need to drop-- there was nothing severe going on with him, and he was still moving forward. But I was pretty sure that we'd be walking it in from here on out.

"Are you chewing the Run Gum yet?" I asked.

"No," he said, and fished for it in his pack. I took some of mine at the same time.

A few minutes later, we were running again.

We hit the turn around point and made our way back, reversing the direction we had just come. It had taken us 5 and a half hours to go 18 miles. It would take us at least that same amount to head back, and probably significantly more. It must have been around midnight when we hit the turnaround point. Initially I had thought that if everything was going according to plan and there were no significant difficulties, Rob might finish the race around 2am.  This was no longer Plan A.  The good news was that we had plenty of time left on the clock-- 12 hours until the race officially closed. We could walk every step of the way, even stop for a nap, and still make that. But we had only 6 hours left for a sub-24 hour finish. I wouldn't let myself think about it that much, because if I did, I would be able to see it quickly slipping out of our grasp. I hoped that Rob wasn't doing the math, because knowing what the odds were at this point might be the straw that broke him.

We walked. We got out of the way for the throngs of other runners we met. We didn't complain, we didn't talk. Relentless forward progress.

I was starting to feel pretty bad, so I managed to get down a ginger pill and salt tab. I was just hoping to make it back to that aid station where I'd gotten guacamole on the way out. My water was low again, and I was feeling seriously depleted.

Rob didn't sit down this time when we got there. He took some pickles and banana, while I threw down 2 cups of coke as quickly as I could and we headed out again. We weren't moving fast, but we didn't waste any time.

I could tell he was trying to force himself to rally. We'd been walking for a long time, but whenever we hit something that wasn't a rocky uphill, he would run, even if it was just for a few steps. On one of the gentler downhills, he ran the whole thing.

"You did so great on that!" I said, hoping it wasn't annoying. I reminded myself of Fezzik, from The Princess Bride, when he congratulated Westley for wriggling his finger after he'd been mostly dead.

Rob was able to run more and more. In fact, on the rugged descents, I was no longer keeping up. He would go on ahead, but I would catch him as soon as we hit an uphill again. He was coming back to life. I began to wonder if he would drop me-- certainly a very real possibility if he got a genuine second wind. I looked at my watch-- 3am. If I could just manage to keep him in my sight until we got to Confusion Corner again and I got onto the right trail to make it to the finish line, I think I'd be fine on my own. Anyway, less than 2 hours until it would be light enough that I could turn off my headlamp.

We got to the Bluff aid station and I didn't believe it. According to my watch, we still had over almost 10 miles to go, but the map showed Bluff 7.6 miles from the finish. I asked a volunteer, and she told me, yes, this is Bluff. We only had 7.6 more miles.

This changed everything.

We had been barely hanging on to the edges of 24 hour pace-- going by my assumption that my GPS was correct. But it must have been off a bit, what with all the trees. Now all of a sudden, 24 hours seemed a lot more likely. I checked the time. I can't remember exactly what my watch said, but I think we had around 2 and a half hours to go 7.6 miles.

Hang on, just hang on.



Rob was on the edge, and so was I. Nausea was taking hold, and I hadn't eaten in a while. I got a salt pill out of my pocket and tried to swallow it, but it came right back up on the trail, along with some of the aid station coke I'd just drunk. This was no good. I needed something to get rid of the nausea, but there was no way I would be able to swallow a ginger pill. I opened my last ginger capsule and poured the raw powder onto my tongue, then flushed it down with water. The burning in my mouth gave me something to think about besides the nausea for a while.

45 minutes later, we made it to the aid station that was just 5 miles out. It was almost light enough to turn off our headlamps. I guzzled more coke as we ran right on through the aid station. The volunteers cheered maniacally.  "Sub 24!!" The shouted.  We had an hour and 40 minutes to do it.



"Rob, do you think you can do 20 minute miles?" I asked. The last few miles had been close to 15 minute pace, which was quicker than we'd gone in quite some time. Rob's GPS had died a while ago, and I didn't know if he knew how close we were. I didn't know if knowing that would make it better or worse.

We had reached the point of the ultra where he occasionally groaned incoherently. "Roller coaster section coming up," he said.

"That won't be as hard as what you've already done," I assured. He seemed to dread the hills, even the downhills hurt now. But I didn't think the roller coaster would be as bad. Those hills were larger, but they were smooth. And it was the gnarl that was slowing him down because he was struggling so much to pick up his feet.

He seemed to be steeling himself for the roller coaster, preparing himself for the worst.

And then he smelled the barn.

The sky was indigo and lavender. We clicked off the headlamps, and he took off at a run. He never slowed down. He ran the uphills. We were banking time instead of losing it.



Three people passed us in the last two miles, but I think it was only one runner with his two pacers. Rob went with them, and I gave it everything I had to just barely keep up. My GPS clocked us at 8:20 pace uphill-- this was a massive recovery for someone who'd pulled a couple of 30 minute mile just a few hours ago.

At last, the finish was in sight. Rob reached out for my hand and said he wanted to cross the line together.

We did it.

He did it.

Sub 24.


Congratulations, Rob.

Thanks to my in-laws for watching Will and making all of this possible. Thanks for reading. 

Wednesday, May 17, 2017

What it's like being a dyslexia mom

Everyday, you send your child into harm and trauma.

You send him to people who are violating the federal laws set up to protect him.

No one believes you.

Your friends and family look at you blankly and assure you that the people harming him are HEROES. You are just being Melissa, overreacting like you always do. You are unreasonable, unfair, crazy.

You don't sleep at night because you are so fucking terrified about what will happen to him after you die.

You are all alone, screaming into the void.

You can't do it anymore, but the cost of your failure is his life.

Days since last panic attack: 0.


Monday, May 8, 2017

Eres una madre muy valiente

Leda is one of the smartest people I know.

She went to a one-room school in rural Nicaragua. About the time she would have she graduated from high school, she had her only child--a son. She was a cleaning lady at the field station where Rob and I lived for a year when I was doing my dissertation research. Leda washed sheets and scrubbed toilets. Her life couldn't have been easy.

Leda didn't speak any English, but we never had trouble communicating. She was perceptive and could read my body language, and somehow she always knew what I meant even if I didn't use the right Spanish word. She was distant kin to Simeon, the volcano guide who sometimes helped me in the forest.

She never asked me for anything, except some batteries for her flashlight so that she could safely walk home from work one evening. It starts getting dark in Nicaragua by about 6pm, year round. And it is not like there are street lights, or streets. The "road" through the village is more rugged than some of the trails I run here in the foothills of the Rocky Mountains. You'd want a working flashlight if you were walking on them past dark. In sandals.

Years later she asked me for 20 dollars when I saw her in Managua and she needed the money to buy life-saving medication. She was very ill. Rob and I bought her dinner that night too, but she didn't feel much like eating.  She understood me better than I understood her-- I'm still not quite sure what was wrong, and I didn't pry.

She recovered. The last time I saw her, she was healthy and well.

Leda is one of the reasons why my life was never the same after Nicaragua. I remember coming "home" to a strange world of cars and grocery stores and microwaves. I remember watching the laundry spin round and round in the washing machine at our house in Urbana, while tears streamed down my face. What would Leda think of this? She washed bedsheets by hand, on a washboard, in a sink made of concrete.

Leda figured out how to use a computer and type. She figured out how to get a Gmail address and a Facebook account. She figured out how to use Google Hangouts and Facebook messenger. We have kept in contact for more than 10 years.

Shortly after the election this past year, she texted me, asking in Spanish if my family and I were safe. I replied that we were. Leda and I had never talked about politics or religion before. I could tell she wasn't sure where my beliefs fell on the political spectrum, and I also couldn't tell hers. So I asked her what people were saying in Nicaragua about the results of the election. Her reply was something like, we are afraid many will suffer. I said, it is the same here. Then, because I was pretty sure we were on the same page, I told her, "I voted for Hillary." She replied with a thumbs up and smiley face emoji. I wondered if both of us had just been placed on watch lists. I figured it was worth it. She continued, saying that she did not have much, but if my family was ever in need, she would share with us all that she had.

I guess she never forgot that 20 dollars I gave her for medicine.

Leda also read my Facebook posts that described William's struggles with dyslexia. She looked up "dyslexia" (dislexia in Spanish) and learned about what it was. This is more than any of Will's teachers at school have done. She wrote to me and said she was so sorry for our difficulties and that she wished only the best for Rob and me and Will. I told her thank you. She wrote, "Eres una madre muy valiente."

I sat there with the phone in my hand, reading over her words again and again to make sure I understood what they meant. I was ugly-crying before I even knew it.

William had just gotten home from school and was playing with some cars next to me. "Mommy, what's the matter?" he asked. I tried to explain that Leda had written something very kind to me and it had made me cry.

"What did she say?" he asked. I showed him the phone, and I read the words in Spanish. "What does that mean?"

I told him, and then he smiled the sweetest little smile and crawled into my lap. He pressed his face against my face and whispered so that I could feel his warm breath in my ear. "She's right," he said.

*****

A lot of people have called me a lot of things since this whole dyslexia fight began. It hasn't always been kind. Those who are supportive tend to say things like Leda-- they tell me that I'm brave or strong for choosing to fight. I appreciate this, I really do, but I don't feel that it's true. 

I am the least brave or strong person I know. And I did not choose this fight. I am backed into a corner and my child's life is on the other side. I will eviscerate anyone who stands in my way, even if it kills me.  And it will kill me. This isn't what I want. This isn't what I spent my whole life working for.  But I have no other choice. 

A few weeks ago, I contacted a local dyslexia parent support group and told them that I was considering going to speak at a school board meeting about the lack of appropriate intervention in schools and the life-long negative impact this has on dyslexic children. A few other mothers said they would go too. One of the mothers mentioned our intention to the assistant superintendent, and the reaction was very swift. Several school district officials offered to meet with us and discuss our concerns immediately. Better to keep these comments in a private room, I suppose, than in the publicly available minutes of the school board meeting.

We took them up on their offer, knowing we could always approach the board afterwards, particularly if our meeting with them did not go well. Several parents attended. I did not smile at any of school district officials. I couldn't. These are the people who are directly responsible for throwing my son's life away. These are the people who are throwing away the lives of as many as 6,000 children in the school district. Dyslexia is real, and it affects 1 in 5.

The assistant superintendent was at least somewhat receptive, which is a vast improvement compared to anyone else I have dealt with in the district. He seemed motivated by the possibility that our school district could do better than Boulder, which initiated a pilot program offering Barton instruction to 100 dyslexic kids in school. Our district currently does nothing but deny that dyslexia exists. He seemed intrigued that by providing appropriate instruction, we could lower the appallingly high drop out rate and epidemic of adolescent suicides in the district (depression, anxiety, dropping out of school, and suicide are all higher in unremediated dyslexics). He said he would get back to us within ten days. The clock is ticking. The lives of thousands of children hang in the balance.

After the meeting, the other dyslexia parents stood around, rehashing and decompressing, and marveling at how similar all of our horrifying experiences have been. There may be no other human universal. Dyslexia is the great equalizer.

The other parents all had children older than Will, and their concern was mainly about their kids entering middle school in the next year or two. Even though Will is a bit younger, it occurred to me-- none of the changes we proposed would in any way benefit him. We asked for mandatory kindergarten screening and at least one dyslexia specialist in each elementary school. I specifically demanded Orton-Gillingham instruction for every child identified who could benefit from it. 

Even in the extremely unlikely scenario that any of these proposed changes would be put into place during the next school year, Will would be in third grade. And we've already paid thousands of dollars in private dyslexia tutoring to save his life. The effort would be put towards identifying the younger kids and providing them with intervention. Will would be past it. Shit out of luck.

I realized at that moment, I wasn't doing this for him after all. It is too late for him. I'm doing this for the other kids, for the other dyslexia moms, so that they never have to go through what I have. 

It took a minute or two, for all of this to sink in.

There's this ethos among special-needs moms, or maybe all moms, or maybe all women in general, not be be seen as complaining. I've lost friends and made enemies for speaking up about what the schools in our country do to dyslexic kids. Nobody wants to go through this, to be seen as such a negative person. We'd all rather believe that schools are good, and teachers are heroes. It's easier that way. It prompts us to silence, but silence is acceptance, complicity even. And it makes every single dyslexia mom have to reinvent the wheel. We've known for decades what instructional approach dyslexic children require in order to learn, but schools simply refuse to use this. The stories dyslexic people tell about their experiences in the 1950's, 1960's, are no different that what is happening today. We've lost generations of brilliant people who were never taught how to read, and it is time for that to stop.

I'm not strong, I'm not brave, and I absolutely can't do this alone. Who is with me?

Tuesday, February 14, 2017

Dear William (90 months)

Dear William,

On February 12th, you turned 7 and a half years old.

Life keeps getting harder and harder every day. But I will continue to fight for you as long as there is breath left in my body.



You are so much stronger and braver and kinder than I could ever be. I keep reminding myself that, whenever I get scared.


Dyslexia is a gift. Everything is going to be fine.

Love always,
Mama

Thursday, January 12, 2017

Dear William (89 months)

Dear William,
Today you are 89 months old.

Ms. Valerie asked you to draw a picture of what dyslexia means to you, and this is what you drew:

"This is my drawing," you said proudly. I've always told you that dyslexia is a gift. I cried. Ms. Valerie hugged me.


Star Wars Rogue One came out in mid-December and we all went to see it. I loved it. You didn't like the ending. You said you liked Episode VII better. There had been a blizzard while we were in the movie theater watching it, and we came out to like a foot of snow. I'm glad your dad was driving on the way home. It was terrifying.

On Christmas Eve, we took AJ to RMNP for some sledding and ski mountaineering. At first it was very cold, but after the sun came out, you practiced on your skis.

AJ is one of your faves. You told him he's a Ravenclaw. But his wife is a Gryffindor.




On Christmas morning, you woke up at 5am.

You were very thrilled with all your presents, but especially with your Harry Potter costume (robe, wand, glasses, and Gryffindor necktie).


It snowed some more on Christmas, and you were thrilled.

"I'm going outside now, to run around in the snow with my broomstick."


You also got a chess set and you love playing chess.




We did not go to Across The Years this year because both mommy and daddy were injured. We took a couple of small ski trips instead. You guys skied, I worked on a novel.

Our first trip was to Eldora, on a very cold, blizzardy day.


When you got too cold, you came inside the very crowded ski lodge and played chess with me.



We also went to Winter Park. The weather was much better. I think they call this "bluebird skies," but I don't really understand much about ski lingo.


You and your dad left for an epic ski run about 2 hours before sundown, and it ended up taking you a lot longer than you and daddy thought it would. One of the hills was marked as "easy," but it actually was quite hard and scary. It was getting dark and the lifts had all closed and you guys had not returned. I was so worried. I kept seeing snow mobiles going up the mountain and returning with people who were injured or otherwise couldn't make it down. It was freezing cold and I wandered around, looking for you.

At last, I saw you both. You were okay. You were just scared and moving slowly. You removed your skis and ran down the rest of the way to me. I'm still not really sure what happened during those 2 hours because you wouldn't say anything other than to tell me you were cold and angry.  But the next day you said you wanted to go skiing again.

This was from earlier in the day at Winter Park.

We did eventually return to Eldora, where it was again a blizzard, but you and your dad were brave enough to ski for a while.



It's back to school now, after winter break. I miss you terribly. I don't understand the other parents, who say they are happy to get their kids out of the house send them back to school. My happiest times are when I am with you. You are the bravest, kindest, strongest person I know.

Love always,
Mama

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.

#SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA. #SAYDYSLEXIA.  #SAYDYSLEXIA. 

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,
Mama

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.


via GIPHY

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.


via GIPHY

Thanks for reading.