31 December 2015

No really, this time, I swear.

All this year I have repeated myself, each time thinking I was saying something new. I wrote the same blog post multiple times without realizing it until after I hit “publish.” I mourned my body's changes over and over again. I said I needed to accept it, but I couldn't. Then I said it again, surprising myself with the slow realization that I'd said it before.

Yes, I am about to do it again.

In broad strokes, here is the story of my 2015. I tried fighting MS. I tried an extreme diet that might have helped but I could not live with it. I tried mind over matter; believing that I didn’t have MS or that I could will it away. I tried meditating; I tried supplements, I tried medication. My MS got worse. Maybe I failed, or maybe it didn’t matter what I did because MS is a medical disease and not a spiritual condition, a choice, or an imaginary friend.

So I gave up, which is to say I accepted everything. This does not mean I lie in bed all day and eat ice cream. It means I am changing the story I tell myself. It means doing what I can, when I can. It means moving beyond the repetitive cycle of mourning and denying. It means celebrating unconventional victories.

One of my goals for 2015 was to run 10 miles without encountering the MS symptoms that affect my legs. It’s now December 31st and I can only run 3 miles if I don't take walking breaks. But I did figure out how to cover 8 miles; I run three-quarters of each mile and walk the rest, then repeat. I also learned how to change my stride in the later miles of a run so that I don’t trip and fall. These are victories, but only if I accept them as such.

I’m looking forward to 2016 because the practice of accepting has given me confidence. I’m not as scared as I was. I am not finished with the work of accepting, because things will continue to change, but now I know I can do it. Next year will not be about learning to cope with life; it will be about living.

07 December 2015

Antelope Canyon Training, Week 1

I don’t know what I’m doing. Mechanically, I know what I’m doing. I am running, sort of. I am on a training run and I am training for a half marathon. The race is in two months. I won’t be able to run all of it, but I hope I can run at least half of it.

I don’t want to let my thinking dictate or influence my reality. I think that’s possible, like “You are what you eat,” only “You are what you think.” I should say: I may not be able to run the whole thing. My thoughts push and pull between acceptance and inevitability, realism and hope. When you have a disease that people say is incurable, you have these conversations with yourself.

This is what I think during the last mile of every run: I really don’t want to fall. I feel like I am going to fall. I focus on picking up my feet.

Here’s how it is when I run. For the first mile or two, everything feels normal. A flash of hope that this run will be like running used to be, despite the widely accepted belief about my condition: that things only get worse, never better. But pretty soon, my legs get tired and uncoordinated. My feet slap down on the ground, gently at first, then with more gravity. Below the waist, things feel increasingly out of my control. My legs are not numb, but they are not my legs. Soon my toes hit the ground first instead of my heels. I start walking and running in intervals. I walk because I might trip if I keep running. I don’t like to fall. It feels like failing.

When I’m done with my run, I sit for a few minutes and when I get up, I walk like a toddler who is just getting used to being vertical. And then, in a few more minutes, my legs are mine again.

This week was my first week of training for the half marathon. I ran four times; three 3-mile runs (I ran all of these), and one 5-mile run during which I walked about three-quarters of a mile. I did the 3-milers on subsequent days; the first one was great, the second one was a little harder, and the third run on the third day was very slow but I managed to run the whole time. On the 5-miler, I walked a little bit at miles 2 and 3, then about half a mile up a hill. (Once I get tired I don’t try to run uphill because it rapidly increases how tired I get and therefore how far I can go.) It was a good week of training, even if it doesn’t look like the training I used to do.

I think I’m proud that I’m still running, but sometimes I feel foolish. I wonder if running is not meant for me anymore and if I should accept that more gracefully, but I value perseverance and positivity too. I’m not ready to stop running, but it’s difficult to take myself seriously as a runner now. Maybe this is what every aging runner encounters when she slows down. Maybe I shouldn’t give it so much power. I still want to run, so I do. That should be all that matters.

20 August 2015


I just got home from Birdcamp! It was a lot of fun. I know there will be tons of detailed blog posts about it, so I'll just mention a few highlights:
  • I did an 8-mile long run (/walk) in beautiful Leavenworth, Washington. This is a pretty long run for me these days!
  • I stayed with my wonderful roommates from last year, Kim and Ayesha. I am so lucky to have met these ladies last year and even luckier that we all wanted to room together again.
  • We floated down the Wenatchee River, which was beautiful and relaxing. 
  • I took my phone swimming. It drowned. I lost all my pictures.
  • I got to spend time with 99 amazing women who love running as much as I do. 
  • It was inspiring, satisfying, and extremely well-organized (ahem, Lesko). 
  • Meditation with Bree of Jasyoga was super satisfying, and it planted the seeds of my little Birdcamp revolution.

I could list 50 more cool things, but Birdcamp is way more than the sum of all these great moments. It is a magical place where dreams can grow without shame or fear. It's a place where you can pry yourself open and not be afraid of what you will find.

I loved the discussion we had about goal setting with Adrienne Langelier and Lauren Fleshman. I used to love setting running goals, but ever since my running has been affected by MS, I haven't wanted to set goals. I still can't run more than about 4 miles without breaks, and I've been stubbornly vacillating between hoping I can run again like I did a few years ago and considering quitting altogether. 

I've been thinking of my running-related MS symptoms to be different from other "normal people" injuries. Like a good drama queen, I've been convinced that my situation is so much worse than a broken foot. But MS has a lot in common with typical running injuries. I am currently unable to run as far or as often as I want to. I am slower than I want to be. The future of my running career is uncertain. On the other hand, a big difference between having MS and a more traditional injury is that nothing hurts, which is a good thing. And I can't make it worse by running.

It seems like I should approach this like any other injured runner would. So here are the goals I set at Birdcamp.

1. Do what I can do
I will find a run/walk cadence that allows me to complete my February half marathon. At camp, I started experimenting. I ran 10 minutes and walked 1. That seemed totally doable until a giant hill kicked my ass. So I will keep experimenting until I figure this out, and at the same time, I will put together a reasonable training plan.

Maybe I won't recover from this injury, but let's consider the alternatives. I could quit running. Um, no. Not until I really can't run anymore. I could stubbornly keep trying to run as if I'm not injured, but that's not really an option. When my legs stop working, I physically can't keep running. It is better to focus on what I can do right now, today, this week, for the next few weeks, and adjust if necessary.

2. Stay positive and hopeful about the future
I often say (cause I'm a drama queen) that I have an "incurable, degenerative brain disease." You can see why I don't do well at parties. But I don't actually believe that it has to get worse, and most of the time, I believe it could get better. I'm not even always convinced it's "incurable." I believe that staying positive is a huge factor in health outcomes, so I will keep hope alive in my mind and in my heart. I will focus on what I can do, not what I can't.

At Birdcamp, I thought a lot about my relationship with running. Me and running, we've been at a standoff, standing petulantly with our arms crossed, refusing to look each other in the eye. I've been angry at my new limitations, and I believed by accepted them, I'd lose something. But now I can see that was wrong. There is no harm in accepting what *is*. If suddenly someday I recover from my "injury" and can run more or faster, that will be great. And even if not, accepting my self puts me on a better path.

This is why I love Oiselle and the Volée. It's so much more than a group of women who wear the same clothes. It's a safe place to find out who you are and what you're capable of. At Birdcamp, I stopped being angry about where I am with running. I realized that I have a massive opportunity to grow as a runner and as a person, and I should take it. 

14 June 2015

Don't assume you know what progress looks like

Oh running, you are a fickle one.

Some of my recent runs have been amazing. I have done 4-milers which ended with me running (okay, jogging very slowly) up the 150' hill near my house. I couldn't do this a few months ago. I have done 3-milers that ended with me stumbling up the stairs to my front door, hoping the neighbors didn't think I was drunk. I even ran my first 10k race recently, which (to be fair) included a fair amount of walking, but it felt like a triumph anyway.

I'm still adjusting to being a marginally disabled runner. I say "marginally" because I don't look disabled at the beginning of a run, but sometimes I do at the end. Some days I feel pretty accepting of the whole thing, and sometimes I'm squarely in denial or bargaining mode. In my best moments I learn something from everything, and today on my run I saw a parallel between my intense desire to never be wrong, and my reticence to continue taking myself seriously as a runner.

Lately I hope that every run will be the magic run where I am like the Portia of two years ago who could just run forever. But I also know that it's unlikely, and in my more pathetic moments I think maybe I should just quit running while I still can, to preserve the memories of being a "normal runner," whatever the heck that is.

This morning, as I fished my running pack out of the back of the closet, I was planning for an 8-miler but at the back of my mind I knew that I might not be able to run 8 miles.  I chased those thoughts away, prepped my water bladder and pitted some dates (a whole food gu alternative), leashed up the dog and got going.

Things were going swimmingly at first. It was a beautiful day and running felt easy. But around mile 4 I started feeling the dreaded lazy feet; it feels like I can't pick my feet up, even though the rest of me feels fine. If I keep running, eventually I start tripping over my own toes and even when I start walking, I look a little tipsy. Then, severely drunk.

Instead of getting frustrated, I slowed to a walk and ate some dates. And I started thinking. What's so bad about walking during a run anyway? Why does it feel like such a failure? And then I realized that the act of setting out on an 8-mile run and being unable to finish it makes me feel Wrong. I was Wrong. I cannot run 8 miles. Wrong.

Ever since I was a kid, I have hated being wrong. Being wrong fills me with shame, and to avoid this I constantly fill the air with caveats about how I might be, am probably, could easily be wrong. It feels better to presage every statement with an excuse about how wrong I might be, because that means I will be Right! "See? I told you before, I was probably going to be wrong!" So I get to be right either way. Most importantly, I don't look stupid (a.k.a. Wrong, a.k.a. shameful) in front of other people.


When you avoid putting yourself in situations where you could be wrong, you might maybe miss out on trying something cool. You will avoid encounters with failure, and success. And everything else! Being chronically safe isn't very interesting.

So I'm there walking instead of running and I thought, "Who cares? It's a beautiful day. So I'm walking. So what. I was Wrong, and NO. ONE. CARES." I continued walking and jogging on and off for 7 miles. My mile splits went from 10:00 to 12:00 to 13:00 and then finally 17:00 for the last mile, which I mostly walked. But I did 7 miles, which is my longest run-like-thing since November.


Behind me is the familiar solid ground of caution, and in front of me is oh-my-god-I-have-no-idea. I have had this important realization with respect to running, which is great, but can I carry it over into the rest of my life? I think it could be quite awesome to live with the reckless possibility that I might occasionally be wrong. I could fail. If I could accept that, maybe I could try more things. See, I avoid trying stuff because it's possible that I could fail. Wrongness awaits. But... maybe... who cares?

Having an incurable degenerative brain disease is not awesome, but it's a fantastic teacher.

If you've read this far, you might want to check out these TED talks, which have no doubt influenced me recently:

03 May 2015

Progress: Four weeks on AIP

"When I let go of what I am, I become what I might be." -Lao Tzu

Is that so cheesy? The quote thing? Oh well.

I've been doing the Autoimmune Protocol for 4 weeks. At first nothing changed; if anything, I felt a little worse and my running was even more affected by foot drop. It took a shitload of perseverance to keep eating meat and fish (and stinky stinky bone broth!) but I kept at it. If I quit, I would never know if the diet could have worked.

After about three weeks, my energy stabilized. In weeks 1 and 2 I had some great moments and some crashes, but the past two weeks have been amazing. I get up at 5 most days, I run 4 times a week, I work at a pretty (mentally) demanding job and I still have energy to hang with Sean and Maple when I get home. Sometimes I get a little tired around 9pm cause you know, I'm human.

So what have I been eating? Here's a typical day of eating from the past month:

  • Breakfast: Two chicken patties (made at home with ground pastured chicken thigh) sautéed in coconut oil, and a kale/blueberry/coconut milk/banana/spirulina smoothie. 
  • Midmorning snack: Banana
  • Lunch: Giant salad (greens, carrots, beets with olive oil, salt, and apple cider vinegar). Sometimes some leftover roasted veggies from the night before.
  • Afternoon Snack: Coconut butter out of the jar and a granny smith apple.
  • Dinner: Salmon, collards, and a baked yam/sweet potato, or liver and onions with bok choy and basil, and roasted root vegetables and asparagus, or chicken curry soup (made with bone broth).
  • Dessert: Strawberries and peaches.

I also take cod liver oil, probiotics, and a few other vitamins and supplements every day.

So is it working? Yes. This shit works. My energy is better, I'm less wobbly and shaky, and I realized the other day that a symptom I've had for NINE YEARS (vertigo when I lie on my right side - random, right?) has completely gone away.

What about running? It's getting better, slowly but surely. I've been trying to increase my long run length, and today I had a breakthrough run: 6 miles, with 5.5 miles before the dreaded foot drop. Feels like a miracle.

The Autoimmune Protocol is not only about eating. Here are some other things I'm doing:
  • I meditate, or indulge in "brain rest" (where you do absolutely nothing), or visualize some new age healing thing at least once a day.
  • Sit-ups and push-ups a few times a week (this is more for bathing suit reasons than health reasons, but I figure it doesn't hurt).
  • I make a serious effort to avoid stress. I have changed my outlook about things that threaten to disturb my peace. This sounds hard, but fundamentally it's just this: I decided I won't get stressed out. Sean taught me this years ago, that you can just decide. You just walk away from the old thing. It works most of the time, and when it doesn't, I immediately take a time out to calm my nerves. 
  • I also make a serious effort to think positive thoughts. Like "I am healing my MS with food!" and "I will run long distances again!" I even registered for a 25k race in early 2016. Cause I'm crazy. And hopeful. And positive!
  • I'm doing this cool online Shakespeare course, which means I'm reading one play a week for 4 weeks. Last week was Romeo and Juliet; this week is A Midsummer Nights Dream. Using your brain is good for it.
  • I've examined some nonphysical parts of my life that were unhealthy (ahem, money) and I decided to change some things. It's probably not as helpful to spend so much energy on my diet and continue to be unhealthy in other areas of my life.
  • I encouraged Sean to retire from the bakery so he can be my personal chef. He's really (really) good at it, and yes, I know how lucky I am. So. Lucky.

I also saw a new neurologist and I'll be starting a very low dose of medication soon. She considers this a preventative, and I'm finally cool with it. It's funny; I have always wanted to heal myself with diet and lifestyle and not meds. And now I'm doing it - the diet and lifestyle part - and I realize I want meds too. Why not use every tool available?

So what's next? Since this diet is alternately boring and horrifying, and definitely limited in terms of how many things you can eat, I am already starting to reintroduce some foods, like white rice and chocolate. (Most people wait a few months or more to reintroduce foods, but I would rather do it a little early than fall completely off the wagon with Pop Tarts.) Lentils are my next reintroduction - Tuesday! I'm vegan at heart, and the sooner I can find some plant-based protein sources that agree with me, the better. Liver, salmon, and bone broth are superfoods and they are helping me right now, but I am hopeful that I won't need them forever. (If I do, I can live with it, but I'd be happier on a 100% plant-based diet.) I believe the most important things about my diet are being gluten-free, sugar-free*, and dairy-free. Those should be with me forever, but maybe the animal stuff can go eventually.

* A note about my version of sugar-free: I eat sugar in whole foods like fruit - not tons of it, but some fruit every day. I occasionally have maple syrup, dates, or coconut sugar.

I know this post is pretty long already but if you have any questions about the Autoimmune Protocol or anything else, ask away!

05 April 2015

And now for something completely different

I've been vegetarian for half of my life, and it's a really important part of who I am. I never thought I'd stop being vegetarian. But, I also have multiple sclerosis. For about 10 years it was pretty dormant but recently it's gotten worse. Not like "wheelchair" worse, but "messing with my life and getting hard to ignore" worse. I realize this sounds like a stupid complaint from someone with MS, but I'm also a runner, and I can't run more than about 4 miles these days. At this point, if someone told me that I could cure my disease by getting a giant "I love Ronald Reagan" tattoo on my forehead, I probably would.

A few months ago, I started reading a book called Healing Multiple Sclerosis. The author cured herself with a very restrictive diet with the goal of healing her gut. Apparently all autoimmune disease is either caused by or related to gut problems. I'd seen the book before and dismissed it as crazy. After all, MS is incurable. Who did this lady think she was, promoting a cure that was as simple as changing what you ate? Who wants to change what they eat anyway? Not this Pop Tart lover. Dumb.

But when my symptoms started getting worse, I bought the book and read it. I wasn't convinced this diet was going to cure me, but while reading the book, something unexpected and amazing happened. I started thinking that maybe my disease could be cured. It was a huge shift for someone who often joked about her "incurable degenerative brain disease" like it was the funniest thing ever.

On March 1, I started following the diet. I immediately felt better, despite the sugar and bread cravings. But after a couple of weeks on the very restrictive diet (my only source of protein was nuts and seeds), I started to feel weak and hungry all the time. I decided to eat some chicken. It was temporary, I rationalized. After a few months on the diet, you could add legumes, and if I could eat lentils and beans, I figured I could cut out chicken.

But something was bothering me about the Healing MS diet. The author prescribed certain foods and prohibited others, but didn't really explain why. This gnawed at me. Around this time I discovered two more books that promised, if not to cure MS, to at least reverse some of the symptoms and stop the progression of autoimmune disease in general. I inhaled The Wahls Protocol and The Paleo Approach.

As a vegetarian, I'd always thought this paleo stuff was crap, designed to make cross fit freaks feel better about their high cholesterol. But when I started hearing that paleo could have a major impact on autoimmune disease, I perked up. Maybe chicken was my gateway drug or something. But the cool thing about these two books - especially The Paleo Approach - was that the authors explained exactly why they were suggesting the foods in their diets. And it made sense. So I am trying it.

So what does my diet look like? I eat meat, fish, and vegetables. That's pretty much it. I eat lots of fat. I don't eat my beloved potatoes. No rice, no bread, no sugar. No packaged or processed foods. I eat some berries every day, and sometimes I have an apple. It tastes like candy to me now.

There have been some ugly moments since I've started making this transition. I've had some major energy crashes while my body tries to figure out how to fuel itself without the massive amount of carbs I used to eat. Sean has become a full time chef, which is pretty hard since he gets up for work at 4:30. I've sobbed like a stupid baby while choking down meat or fish that I never expected to eat again. I try to convince myself it tastes good and that it's good for me, but it's not quite working.

Do I feel better? I'm not sure yet. It hasn't been very long so I'm withholding judgment for now. I don't feel worse.

Vegetarianism is my religion. I feel strongly about not consuming animals, about not wasting the earth's precious resources to grow animal foods in the stupid ways we typically do (i.e., factory farms). I always thought it was healthier to eat vegetarian, and if I had never gotten this disease, I'm sure I would still feel that way. I acknowledge that this whole experiment might fail, and maybe I'll get worse instead of better. It wouldn't be all bad though, cause then I'd get to go back to eating the way I want to!

Not all the changes I've made are food related. I'm also running a lot less, which I like about as much as the bone broth that's currently simmering away on my stove. I hope the running diet is temporary, but it seems like the right thing to do right now. Healing requires that you take it a bit easy. You should still move, but you probably shouldn't train hard, because it will likely take energy away from the healing that your body needs to do. I've often said my health is my highest priority, but then I put running first, crossing my fingers and rationalizing that running is good for my health. But that hasn't been working so well.

I'm doing a lot of things that feel wrong in the short term, with the hope that they will help my health in the long term. Taken together, these are the some of the hardest things I've done in my life. I don't know if it's courageous and awesome or just a desperate pipe dream (or totally irrelevant!), but I'm doing it anyway.

I want to be healthy again. I want to run long distances again.

I'll keep you posted.

Edited: All the diets that I researched over the past few months are pretty similar. The main points are to eliminate refined sugar, gluten, dairy, soy, and legumes, which will help heal your gut and therefore (hopefully) reverse or stop your autoimmune disease. The Paleo Approach, or Autoimmune Protocol (a.k.a. "AIP," which is what I ended up deciding to do) is the most restrictive of them all, additionally disallowing nuts, grains, seeds and seed oils, eggs, and nightshades. But it does allow fruit, which the Healing MS diet does not. I'm using this cookbook heavily, and the food is actually great, despite all the limitations. Anyone who eats meat would love these recipes.

25 January 2015

The January Report

This year has started off (wait for it...) with a bang. We went hiking! Maple is getting her craft on with sewing classes! Sean started his 50-miler training in earnest and his platypus feet are holding up nicely.

As for me, I am eating well and reading Hamlet. I'm running just a little; about 15 miles a week.

As of this morning, I still hadn't made any running goals for this year, mostly because my running gait has gotten a little worse, so it's hard to think about training. I can go out and run a few miles, but I haven't been able to run fast or long. This might be because I willingly took a break at the end of last year, and slowing my running momentum always brings on fatigue. It might also be because I've had an incurable degenerative brain disease for almost 11 years. Well whatever, I've been hoping that eating well and taking better care of myself would help. And maybe it is helping; my past two runs have been better.

On this morning's run, with the sun blasting through the northwest winter cloud cover (giving my face that ridiculous half-tan with the jagged line running down my cheek), I realized what my 2015 running goal should be. It may be a stupid goal because I probably don't have any control over it, but fuck it, I'm the CEO of me and I get to decide what my goals are! I want to run 10 miles without encountering "lazy feet." To do this I have to focus on getting healthier and not just running faster. I have no idea if it's possible, but it seems like a really worthy goal. And by the way, I actually believe I have some control over this. Some luck would help too.

To accomplish this goal, I think I need to do these things:
  • Eat well (but maybe not as well as I did in January; that was annoying).
  • Consider meds (blah, but probably a smart idea).
  • Increase my long run length, s-l-o-w-l-y. Don't overdo it.
  • Bathe in Vitamin D!
  • Engage in more New Age. More on this below.

This month, I've been under more stress than usual, which definitely doesn't help things in the old brain department. I decided to become a manager at work, which is fun! I am now responsible for the professional well-being of other people. (!!) But since I am a new manager and don't know what the fuck I'm doing, it's a little stressful. But fun. Stressful fun. Is that a thing?

Related: The most rewarding thing that I've done in January so far is meditate every day. I didn't realize how freaked out and anxious I get about everything until I had to sit down with myself and not move or do anything for 15 minutes. Whoa. New Age Alert: I sit with my fear and anxiety and just breathe. When I get up from the mat, I am sort of inwardly holding hands with all the "negative" emotions and they don't really seem so bad. Sounds corny but that shit is a game-changer. You should try it.

Here are some of my best moments so far in January:
  • One of my patent applications was issued! I played a tiny (microscopic) part in this work back at MathWorks, but I am still really proud of it.
  • Maple made some cool shit in her sewing class and she absolutely loves it. We need to start saving for Parsons. 
  • Sean ran 30 miles last weekend, and Sean and Bailey ran 30 miles this weekend. They are a crazy pair.
  • I woke up and realized (again! fuck!) that I am addicted to being negative. I'm trying again to turn shit around and it seems to be working. Since I believe in the whole mind-body connection crapshoot, I think being less negative (see what I did there?) will help my brain too.

Until next time!

P.S. I still want to break 24:00 in a 5k. I just have to get healthy enough to train for it.