Choose Love

I woke up this morning and realized that my life is about to significantly change.  I turned in the letter to terminate my lease for my apartment.  I told my boss that I am going to take a leave of absence. I fired the coach that I started with and who helped me get to where I am now.  I hired a new coach who seems to have a lot of things that I need in order to take me to the next level.

I have learned so much over the past year.  Going into to Track Worlds I had NO idea what I was doing.  I thought I could win races just by riding my bike.  Road Nationals, well let's not go there.  I had some down time from July until now. I rode my bike.  I got car doored. I got sick.  I tried to figure out who I wanted to be as an athlete.

As part of the process of figuring out who I am as an athlete, I found that deep down, there is a black box of anger that I had hidden for most of my life.  I don't want to be angry.  But I was.  And sometimes I still am.  I tried to use that as a motivation. Sometimes it worked, but most of the time I didn't harness the anger properly and it backfired.  So going forward, I am going to choose love.  I choose to love my teammates.  I am going to choose to love riding my bike. It isn't an activity to punish myself with, but an activity to push my limits and appreciate what my body can do for me.

I'm sure there are days the hate will resurface.  But I am going to make a concerted effort to choose love.

Pepita!

I've had a new bike for a few weeks.  Her name is Pepita.  No mom, not Pedita - Pepita!  She is a blue BH Cristal.  I find it awesome that I started this blog about 2.5 years ago to chronicle my pilgrimage across Spain on The Camino de Santiago.  On that trip, I rode a borrowed BH bike and now I own a BH.  She is blue. Not pink. There will only be one pink bike (RIP).

It took me a while to get used to the different components (I switched to Shimano).  But today I had my first ride on Shimano's new Ultegra di2.  The shifting is all electronic.  It's still new and my fingers are still figuring out the new shifting mechanics.  BUT I can see good things in my future with this new shifting.  Since my fingers aren't especially strong, I often struggle to shift.  But with the electronic shifting, one touch of a button and the bike flawlessly shifts.  The soft buzz that I hear is music to my ears.

As I was riding this afternoon, I thought about how far I had come in a short time.  In April, it will be two years since I went to development camp.  In that time I've learned an immense amount about bikes. I learned that the track exists.  I learned about time trial bikes. I learned about overtraining, overhydrating, caring too much about a race, caring too little about a race. I know about failure of my muscles. I know about (most) parts of my bike.  I'm proud of the things I've learned and the things I've accomplished over the past two years.  I look ahead to the future and know that even greater things lie ahead.

National Team Camp

I'm a bit behind on blogging.  A week ago, I got home from "camp."  Now by camp, I don't mean campfires and tents.  We ride bikes. We eat.  We nap. We eat. We ride bikes. We eat.  We sleep.  It's fantastic.  

This year we had winter camp at the Olympic Training Center in Chula Vista (near San Diego). It was COLD!  

The first day we had early morning blood tests.  I survived.  I turned on some Little Big Town and let them take their vials of blood.  That afternoon, I was the very last member of the team to do the ramp test.  I'm not a fan of trainers.  But my bike was hooked up to the trainer and every three minutes, the tension was increased by 25 watts, until failure. I made it far longer than I expected. I lasted a minute and some change at 225 watts.  And that's where pleasantly surprising myself ended.

The next day we did the flat time trial (Otay Lakes). I ended the time trial last, even though I started second. That became a trend.  On the third day, we did the infamous Honey Springs time trial:

I flatted about .5 miles from the top.  Thus marked as DNF (did not finish).  But, that happens.  I felt terrible after every time trial. But when I sat down with my power files, it wasn't that horrible. I'll keep that in mind.

I spent the week with "the baby" group.  Some day I might get to play with the big kids, but first I just need to learn to ride my bike without killing anyone!  We rode 3-4 hours every day.  It was exhausting trying to keep up.  Sometimes, I have to remind myself that as a female and one of the more disabled athletes at camp, I'm working harder than most just to keep up in warm up.  It was a stark reminder of how much I have to learn and how far I have to go.

We do get to eat good food!  That we don't have to cook!

I think they should let us out on the BMX track.

This year is going to prove to be exciting.  The door is open, I just have to work hard and push through.  Stay tuned...

Otay Lakes TT

I am going to write this tonight because today was just a baseline.  That's all it was. One data point.

Yesterday we had a Lactic Threshold ramp test. What is that you ask?  Our bikes were hooked up to a computrainer - a torture device that adjusts the tension on your bike to "make" you pedal a certain power.  We started at 100 watts and every three minutes we were increased by 25 watts.  I had no idea what expect.  I ended up pulling off a good result. I got up to 225 watts for about a minute and some change.

Today was not so surprising.  We had a 15k time trial. It's mostly flat with some rollers.  I was started second (we were in reverse order of expected speed - slowest goes first).  I finished last. It was disheartening to be passed by every member of my team.

Track Nationals

Track National Championships 2012

Track Nationals was a mixed bag this year.  I didn't particularly want to race, seeing as I haven't spent any time on the boards since before Augusta.  But the email came through that I needed to race, so I decided to race the 500m time trial.  I probably should have raced the pursuit as well, but that's why this bike racing thing is a long term learning process, not an instant gratification data point.

So, we'll skip right to the part where I DID "race."  Since The Games were just a few weeks ago, there weren't many people there.  I was on the track alone.  Warm-up went well, being on the track went OK and I was just shooting for a sub-50 second time.  After an OK start and a less than admirable second lap, the final time was 49.05 seconds. Not bad for less than optimal fitness, training and being broken.  I'll take it - along with the National Championship jersey that goes with it.

But the time at the track brought up the fact that I need to commit and jump into racing with both feet.  I don't like looking stupid.  I don't like getting dropped at the start.  But if I want to be a bike racer, then it's time to be a bike racer.

Game on.

When you get beat by your own brain

I fight myself a lot.  I would be 99% more efficient if I would learn to let go.  The more I get into my own brain, the more problems I have.

I've been training relatively hard, given the fact that I broke my collarbone 10 weeks ago.  Last weekend we did a Gran Fondo.  Ouch.  But I felt good. I rode with people who don't know me, and I was able to keep up.  The beginning of the week was not so great. But by Wednesday the legs started to come around.  Thursday and Friday were OK.

Saturday I rode with my uncle.  He was hurt recently and hasn't ridden much and yet, he could have throttled me if he wanted.  On a climb that I've done hundreds of times - up to Pepperdine - I was pushing 200w (which is a LOT for me) and yet I was passed by people who just seemed to be soft pedaling up the hill. I get really frustrated when, even though I'm doing well for me, I still get creamed by others.

I want to be good. I want to be fast. I want to keep up with the able-bodied people.  I want to belong on the National Team and not be there by accident.  I want to do well.

I need to have realistic expectations.  I need to give myself credit when I do things well. I need to stop giving a fuck and just ride my damned bike.

On being...what I am

I'm not always sure how to address the issue of being "disabled." Since I had GBS when I was two, I don't really know the difference.  For at least 28 years I pretended that nothing was wrong.  Sure, I wore AFO's and walked funny, but I was just like every one else.

It seems ironic, in my mind, that it took hanging out with a bunch of crippled people to figure out that I actually AM different from everyone else.  This is the best part of being part of the National Team. Even better than the awesome kits.  I finally realized that there are people "like me."

"But you don't look disabled."
"You got beat by someone with ONE leg?"
"You're tired?  You never go out!"

Why, yes! To all of the above.  I can fake being normal pretty well, but the bottom line is I'm not playing with a full deck and it's about time I give myself some credit for that.

The most difficult concession I've made is that I'm tired. All. The. Time. And it's not necessarily my fault. It's part of who I am.  I can't expect myself to "keep up with the __________'s."  Today, I spent 2 hours cooking food for the week and I'm exhausted.  I want to finish cleaning my house, have all of my laundry folded and organized by color, iron all of my clothes that I just washed, lay out all of my clothes for the week and then go to church, be social and support the friend who needs help.  But I can't.  I'm exhausted.

So instead of pushing the limits, I'm going to rest.  The mess will be here tomorrow.  And hopefully so will I!

The Travels

Some days, you wake up and you are happy. Today is one of those days. I wish that I could bottle up whatever it is happened while I was sleeping and save it for the "other" days.

A lot of things have happened in my life. Some things I am not so proud of, others I relive every day.  There was a time in my life when I thought I needed a day, year, five year and overall life plan.  I'm not sure that's the way anymore.  It is most often the things that I had no idea I was going to do that have changed me for the best. It is the people I never expected to be important to me, the activities I never dreamed I'd participate in and the feelings I didn't expect that have made all the difference. Most of all the things that I was most afraid to do and was convinced for some reason or another were not "good" for me, are the things that have clearly defined some of the greatest moments in my life.

2012 Road Nationals

It has been a month since the time trial at Road Nationals that served as the Paralympic Trials.  It's probably time that I finally sat and thought about all that happened.  I'm not a fan of not doing what I set out to accomplish.  And let's face it, that time trial could not have been further from what I thought would happen.

Strom Thurman Damn

We arrived in Augusta on Sunday after racing in Ocala, FL for the weekend.  We spent a lot of time on the time trial course, refreshing our memories and teaching our bodies how to ride it.  On my final ride before the actual event, I felt good.  I was shifting through the rollers a lot better, my body was acclimating to the heat and I was feeling good.  

Pretty sure I will never actually like skin suits.  (This picture is actually the time trial in Ocala - I think all the other women in my category thought I was going to be fast because I was wearing my CA State Champ skinsuit. HA!)

Thursday arrived and we followed the same routine we had the entire week. We left for the time trial course around noon.  My start time was 3:28:30.  We arrived at Strom Thurman and found a parking place that was far enough away from the rest of the parathletes, but close enough to know what was happening. I flew through bike check and got ready to race.  As I arrived at the start line, I saw Allison, but no Barb.  Barb wasn't coming.  Immediately I knew this changed the game.  I didn't have anyone to chase or base my speed upon.  The next person was a handcyclist that started about 3 minutes ahead of me.  Allison started thirty seconds behind me.  I started to let my mind get the best of me before we even started.  And it just spiraled out of control from there.  The beeps counted down, I pulsed the pedals and I took off across the same bridge I had ridden across so many times in the previous few days.  I felt OK, but not spectacular. First mistake allowing that to be a conscious thought. In my mind, I knew that Allison was not that far behind me. Second mistake. About ten minutes in to the time trial I committed the mortal error of looking behind me. I saw Allison gaining on me and began to lose hope.  And when you lose hope and faith, there isn't much more to go upon. About 1/3 of the way through the race, Allison passed me and I mentally and physically imploded.  I lost power. The final hill before the turn around (which I had practiced and rehearsed hundreds of times - OK, it just seemed like I did!) kicked my butt.  At the turn around, Allison was already about 30 seconds ahead of me.  It wasn't pretty on the return ride.  I finally crossed the finish line at 35:02 minutes.  Yes, more than three minutes faster than last year, but still much slower than anyone had anticipated.

I was beat. Pure and simple.  I did not handle it well. I didn't talk to anyone, but burst in to tears as I rode up the hill back to the car.  I spent an hour alone and then decided to ride my bike home back to the hotel.  

Second and last, all at the same time. Again.  

I am disappointed in my performance and was pretty sure that it couldn't get worse.  Oh how I was wrong!  

The next day was the crit, essentially a circuit race around a city block.  The course was 1km and we were supposed to race 15k.  I went over strategy and thought it would be a good race.  I made sure I started behind Allison and was clipped in.  At the second turn, the guy in front of me wiped out.  I ran off the road, onto the sidewalk and through a grass patch. I went off the curb and tried to chase back on.  But as one of the most disabled members of the team AND a woman, it's pretty rough to chase back on. The race became a time trial and I continued to suck.  I caught on to a few wheels and stuck for a few seconds and then got dropped.  I'm pretty sure I yelled at a team member who was cheering me on and I flicked off my coach. Again, losing is not my good side.

There's me - all alone. Dropped and pathetic.

It was disheartening. I just wanted the second day of embarrassment to be OVER. As I rolled through the final straight away, I saw Allison and Meg Fisher approaching from behind. Although I couldn't win, at least we could have a sprint at the end.  Coming in to the last 200 meters and the sprint, we made a left turn.  I remember my front wheel crossing Ali's back wheel and thinking, "Oh crap, I'm going down." Then I woke up in an ambulance.  

Ouch!

I ended up with a broken collarbone and a CT scan that showed I had a severe concussion and evidence of "blood on the brain." I spent the next 24 hours in ICU in Augusta, GA.  The road race commenced on Saturday, without me.  Although at that point, I was mentally out of the game anyway.  

I am very blessed that my teammate, G rode to the hospital with me and stayed with me until she had to leave to be nominated to the London team.  My coach stayed with me while they x-rayed me and poked and prodded me.  My best friend, Kate, had come from Atlanta to see me race. I am so grateful she was there. She stayed with me in the hospital, helped me change my clothes and brought me Fig Newtons and Diet Coke.

I flew home with my coach on Sunday.  Definitely not my finest flight home. There is picture evidence of how pathetic I looked, but we'll leave that on someone's phone. My parents picked me up from the airport.  I had surgery the next Friday to mend my collarbone.  

I think I'll get a tattoo under this seven inch scar that says, 

"I went to the Paralmypic Trials and this is all I got."

Well, that's not real pretty!  

"Do not be afraid of failure, but learn from it."

--John Wooden

Road Nationals 2012 will serve as one of my biggest failures to date.  I've failed before and perhaps even as significantly - but this is the first time I had publicly laid my goals out. I wanted to at least put up a good showing and in my dream of all dreams, I wanted to go to London.

I don't like to lose.  I really don't like someone else to win.  In a very demented way I am glad that I got hurt. It allowed me to leave all of the negativity that I acquired in Augusta.  The past month has been difficult for many reasons. First of all, rehabilitating after surgery has been strange. I'm not used to being cut above the knee. At first, I was thrilled because pain medicine actually works on a part of the body that doesn't suffer from neurological destruction.  But soon impatience began to set in. This wasn't big surgery. I should be better by now.  Second of all, it has taken my emotional side a little while to come to the grips with the whole situation. The disappointment of months and months of hard work culminating in nothing is a difficult pill to swallow.  Athletics is a different game (pun!) than academics.  There are so many things that I need to learn to be a bike racer.  That's all I am going to say about that.  I want to be able to learn from what happened, move on and be more successful in the future.

What happened in Augusta will not truly be a failure unless I don't take what I learned and apply it to the next season.

And so we begin...

It's been three weeks since I crashed and broken my collarbone (amongst other things) in the National Championship Crit in Augusta.  I would love to say that I have spent those three weeks cementing my commitment to the next four years to Rio.  But I'm not sure that's what I've decided and I'm OK with that.  That doesn't mean that I haven't been thinking and figuring things out.

I am acutely aware of how blessed I am to have the people in my life that are in my life.  I don't remember anything after thinking, "Oh crap, I'm going down," until I woke up in the ambulance.  And I woke up next to G. I couldn't have asked for a better person to keep me calm and stay by my side.  My coach, my best friend and my parents all took care of me until I was able to take care of myself. I can't put in to words how grateful I am for all of those people.

Since I haven't been allowed to ride my bike I've had a lot of down time, which I am not used to.  I've remembered how important having people in my life is to me.  The people that I have met over the past year, through US Paralympics and other areas have changed my life.  I like the person that I am now much more than the person I was a year ago.  I am disappointed that I let my head get beat at Nationals.  I want to have a chance to make up for that.  I want to be able to say that I rode my bike and won.  But I know (kind of) the commitment and sacrifices that come with being able to say that.  I need to find who I am as an athlete and capitalize on my strengths instead of taking what works for others as what will work for me.

Tomorrow, I'll go back to the gym since I'm not allowed to ride my bike outside for another three weeks.  It isn't going to be pretty considering the fact that I've sat on my rear for three weeks.  I want to be resolved that I am going to commit to the bike for the next two years until Greenville.  Given the amount of reading I have on my nightside that revolves around learning to ride my bike, you would think I'm quitting my day job sooner rather than later.  There are a lot of things to consider.  I'll keep you posted...

Love this song!

You only know what I want you to
I know everything you don't want me to
Oh your mouth is poison, your mouth is wine
Oh you think your dreams are the same as mine
Oh I don't love you but I always will
Oh I don't love you but I always will
Oh I don't love you but I always will
I always will

I wish you'd hold me when I turn my back
The less I give the more I get back
Oh your hands can heal, your hands can bruise
I don't have a choice but I still choose you
Oh I don't love you but I always will
Oh I don't love you but I always will
Oh I don't love you but I always will
Oh I don't love you but I always will
Oh I don't love you but I always will
Oh I don't love you but I always will
Oh I don't love you but I always will
I always will
I always will
I always will
I always will
I always will 

The Final Push

Nationals is less than three weeks away.  Last week was "fun;" if by fun you mean the stomach flu and getting stitches.

Today was a really good training day. I climbed Latigo and beat my previously recorded fastest time.

I wish that I could bottle the confidence I had when I finished that climb.  I am always, always looking to be better, to be the best.

Thirty Year Anniversary

Thirty years ago, I looked like this:

I was diagnosed with Guillain Barre Syndrome on May 12, 1982.  

A month and a half later, I was doing much better!  My mom remembers thinking how great I looked in this picture!

Today, I rode in a time trial in San Diego.  I rode a 40K time trial yesterday, so my legs were tired.  But I rode well.  I dropped 30 seconds off of my time from a month ago and I rode 95% of the national standard (how we judge how "fast" we rode across classifications of disability).  Both things of which I can be proud.  But most of all, today I was faster than two "regular" girls.  For a year, I've been passed and lapped by able-bodied women.  It's hard on the psych sometimes.  I am functionally the same as my competitor who has one leg and rides without a prosthetic, but unless you notice by uber-skinny lower legs or watch me walk drunkenly - I look "normal."  So to finally "beat" someone is something I can be proud of.  I can't think of a better way to celebrate being me.

Someone asked me to write something about my "GBS Experience" and this is what I came up with:

This year, this month is my thirtieth anniversary of getting Guillain Barre Syndrome. Sometimes, I think I’m “lucky” because I had GBS when I was two years old and so I had no concept of “before.” This is my life. GBS is part of my life, but it does not define who I am or who I will become.

I was just two years old and I had the flu. My mom was getting more and more concerned because my fever wasn’t going down and I wasn’t sleeping. She carried me in to the pediatrician one day and he said he wanted to see me the next day. She carried me in to the doctor the next day and he asked her to put me down on the floor to see me walk. I immediately collapsed on the floor. Thankfully, my pediatrician had seen a case of GBS in his residency, so he told my mom to grab my car seat from the car, he grabbed oxygen and they drove to the hospital in his car – not wanting to waste time waiting for an ambulance.

The next day I was on a ventilator. I was in ICU for a month and in the rehab ward of Children’s Hospital of Los Angeles for three more months. I can’t tell you a lot about what happened during that time. I have a vivid memory of a hallucination of my parents signing papers to leave me there and I remember being on the tilt board and being “bribed” with Apple Jacks. All of my other memories are reconstructed from other accounts. And to be honest, I don’t really care. My life is about today – not thirty years ago.

After a year, when I was finally “walking” again I got my first pair of AFOs. I had severe foot drop and still had weak hand strength among all of the other residuals. Over the years, I’ve had thirteen surgeries to help with orthopedic problems that arose because of muscle weakness. When I was twelve I had my left ankle fused and had the right fused when I was 24 which allowed me chuck the AFOs in the trash. I have severe residuals, probably in the bottom 10% of those with GBS in terms of returns of functioning. Debilitating neuropathy is a part of my daily life. Buttons are my mortal enemy. I perpetually walk like a drunk person. I have 30% functioning and feeling in my lower limbs. That’s who I am.

Growing up wearing AFOs wasn’t pleasant. I was teased. I couldn’t play weight-bearing sports. My parents and I were told I was crazy because my feet hurt and there was nothing wrong. I am terrified of needles because of being poked so many times. I stumble and trip more than any sane human should. I can’t wear high heels. The thing about my GBS is that it is just part of my life. But it doesn’t stop me. I am blessed to have parents and a family who allowed me to “do what I want” (my signature phrase) and support me along the way.

I don’t want my GBS story to be about what limits me because I truly believe the only thing that limits me is myself. I’m now 32 years old and I’ve experienced life, not life with GBS. I was a Varsity swimmer and water polo player in high school. I taught myself to “roller blade” (even though my mom hides my rollerblades in the attic). I raised nine puppies to be guide dogs for the blind. I’ve graduated from top universities and have two master’s degrees. I taught elementary school for six years. I’ve ridden 100 miles on my bike to raise money for my best friend who has MS. I am on the United States National Paracycling Team and I am competing for a spot on our team to go to London for the Paralympics.

You’re not a victim, it’s just something that happened to you.  So don't live your life missing the things you might have done, but do the things you want to do.

Everything's Amazing and Nobody's Happy!

Happy Gimp Month to Meeeeeeeeeeeeeee!

May is National Guillain Barre Month!  Hooray?  Not only is it National GBS month, this May will mark 30 years ago that I had GBS.  30 years people....that's a LONG time ago!

From http://www.gbs-cidp.org/:

Guillain-Barré (Ghee-yan Bah-ray) Syndrome is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord.

It’s also called:

• Acute Inflammatory Demyelinating Polyneuropathy
• Landry’s Ascending Paralysis

What causes GBS?
The cause is unknown. We do know that about 50% of cases occur shortly after a microbial infection (viral or bacterial), some as simple and common as the flu or food poisoning.  Some theories suggest an autoimmune trigger, in which the patient’s defense system of antibodies and white blood cells are called into action against the body, damaging myelin (nerve covering or insulation), leading to numbness and weakness.

I had the flu a week before I was diagnosed with GBS.  It happens fast.  One day I was a normal two-year-old, a few days later I was paralyzed in ICU.


How is GBS diagnosed?
To confirm a diagnosis, two tests may be performed:
- A lumbar puncture looking for elevated fluid protein
- Electrical test of nerve and muscle function

I am incredibly grateful that my pediatrician had seen a case of GBS in his residency.  He had my mom put me on the floor to walk and I collapsed.  He didn't even wait for an ambulance, he grabbed an oxygen tank, told my mom to get my car seat (even though it was 1982) and we drove to the hospital in his personal car.  


How is GBS treated?
GBS in its early stages is unpredictable, so except in very mild cases, most newly diagnosed patients are hospitalized. Usually, a new case of GBS is admitted to ICU (Intensive Care) to monitor breathing and other body functions until the disease is stabilized. Plasma exchange (a blood “cleansing” procedure) and high dose intravenous immune globulins are often helpful to shorten the course of GBS.The acute phase of GBS typically varies in length from a few days to months, with over 90% of patients moving into the rehabilitative phase within four weeks. Patient care involves the coordinated efforts of a team such as a neurologist, physiatrist (rehabilitation physician), internist, family physician, physical therapist, occupational therapist, social worker, nurse, and psychologist or psychiatrist. Some patients require speech therapy if speech muscles have been affected.

Unfortunately none of these treatments were readily available when I had GBS and even they had been, I didn't have enough blood to sustain them.  So, GBS ran its course.  I was paralyzed in ICU and on a ventilator for a month and then stayed in the hospital for three months after that.  I was released even though I still couldn't walk.  I wore AFOs until I was 24 (don't ask, still not my favorite subject) when both of my ankles were fused.  I don't remember much and most of what I know comes from my parents.