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The Hardest Thing I have Ever Done

It is quiet.  The air is still. I hear a soft pounding in my chest and my feet on the asphalt.  My heart reminds me of the task at hand: kee...

Friday, June 20, 2014

Insight Into The Lesser Known

It is important that I remember why I started this blog.  When I was first diagnosed with MS, I had a friend tell me that I should learn all that I could about the disease.  This was during the "soft diagnosis" period, before they had done the spinal tap and confirmed that I--in fact--did have MS.  She said that if they found out later that what I had was not MS but some other neurological disorder, well, then I would have some knowledge about something of which I had no previous knowledge and I would be glad for that, at least.  She went on to explain that if I was diagnosed with MS, then I would be better prepared once the "concrete diagnosis" was in.  She was right.  And I can now apply that line of thinking to many other things as I have learned and grown.

See, what I discovered when I was first "soft diagnosed" nearly ten years ago--when that calloused neurologist joked "at least you don't have a brain tumor" --was that there wasn't a lot of personal information available on MS: the experience of having it, living with the effects of the disease, coping with it, dealing with (at the time) the limited drugs and their side effects, the barriers in treatment, the stigma in admission to employers and co-workers.  In a decade, a lot has changed.  Still, it was what I discovered then about MS, or should I say what I realized was missing in the field of knowledge that led me to name my writings "Insight Into The Lesser Known."

I remember scrambling for information.  Certainly the facts we available at their base level.  MS is an autoimmune disease.  MS is a hyperactive attempt to control disease in the brain where antibodies attack the Mylin (the protective layer) around the brain's delicate nerves, thus causing short circuits in the body of the MS victim.  I saw the word 'victim' a lot more back then than I do now.  But I digress.  The point is, what I was looking for was personal experience.  Where were the blogs, the stories, the insight into the intimate places where those with MS suffered or didn't suffer? How could I learn about the emotional side of this chronic illness, the effects on families, the loneliness of this disease?  Well, I decided, I would start to share my own experience, from the very beginning.

At the time, blogging was a limited field.  It is wonderful to see who far we have come without social media.  I know some may frown upon this decimation of personal information, but for someone like me, someone looking for insight into the lesser known, blogging has been a great tool.  It has enabled me to not only share my own insight but to also learn so much about the personal experiences of others.  And now there are social media sites that are just for those with MS.  I have found these places to also be very helpful.

When I started writing this all down, I promised that I would share the good and the bad.  My goal was to reach those with questions and hopefully provide some answers.  This continues to be my goal today.  Sometimes the question is, can I get through this depressing dark winter or stressful time?  And the answers have filled these pages.  Sometimes it is about my struggles with heat and diet and exercise.  Often it is about overcoming the odds.  Triumph!  Winning!  But I am also honest about my setbacks and struggles.  That is only fair. 

And all along, I have been engaged in running.  I have run trails and hills and marathons.  My readers have come with me on each step.  I have shared the difficulties and the joys of each big race, of each event.  I have written about my children and running with them, running with my husband, with friends, with memories and ghosts and strangers.  And I have written about running with MS.

This is something that I feel deserves a written record: running with MS.  You see, if one of you reading this has MS (and I know of several now) and you stop and think to yourself, "I bet I can do that too" even for a small minute, a fraction of a second, giving you a little insight into a subject that I found no written word on when I first started, then I have done my job.  I will continue to do my job.  I write to you, to grant you this insight into the lesser known personal struggles and accomplishments of having MS and living life anyway.  I write to grant insight into the lesser known MRIs and the lesser known finish lines, and the lesser known defeats, and even insight into the lesser known triumphs and joys of victory.  See the path, my friend.  You can come this way too.  And maybe when you share your insight into what is now the lesser known, you will describe new wings of glory flying through the sweet enraptured sovereignty of a cure.

Sunday, June 15, 2014

Father's Day

This year for Father's Day, I ran the Prost8 8K in honor of my dad, Ron Zimlich.  He was recently diagnosed with prostate cancer.  They have every reason to believe he will be okay because they found it early.  He is looking into the surgery now and I will keep you all posted.  I love my dad a lot and think about him all the time, so it only seemed fitting that I would get to participate in this event on Father's Day. 

Happy Father's Day, Dad!  I placed 2nd in my division and paced 9:17.  Let's just say I felt inspired.
Here are my stats!

Saturday, June 14, 2014

Training Begins Again

Today marked the official beginning of my training for The Oregon Marathon later this summer, on September 13.  I ran this morning's moderate distance with Joe's Team.  We are currently in third place for the most enrolled runners for the teams signing up for the marathon and it is already starting to feel electric! 

After only two very slow and short runs since Newport, I paced fast today at 10:01 for seven miles.  I guess I was excited to be out, feeling strong again, running in cool conditions with proper shoes.  I am happy to once again participate with this group.  They have become my running family.

Something I have been thinking about with cooler conditions is that I am not the only one who suffers when the temperatures rise.  In fact, heat is a common complaint with my teammates and with other runners I know.  This got me to thinking that maybe I don't suffer from heat depletion because of my MS.  It stands to reason that if so many others also slow down as the morning heats up then maybe it's just another thing, like correct shoe size and even pacing.  I can let up on myself with the MS issues and just take it in stride with my fellow runners.  This does not mean that I would subject myself to unnecessarily high temps just to test my theory (i.e., you wont see me signing up for The Badwater anytime soon--or ever) but I think I can rule out MS as the culprit in my heat issues, at least for now.

That said, I am entering into this training session with a new attitude.  I am willing to let the MS just be another thing that exists in my life but that does not hinder my abilities and capabilities.  I am allowing myself to be just another runner--a runner among runners.

Here is the plan for the week:
Sunday, Prost 8K
Monday, rest
Tuesday, 3 miles
Wednesday, 5 miles
Thursday, 4 mile trail run
Friday, 7 miles and Yoga
Saturday, Biking and Yoga (maybe)
Sunday, Joe's Team 8 miles

If you want to read other blogs by runners also training for The Oregon Marathon, click this link:

Official Oregon Marathon Bloggers

If you want more info on Joe's Team, check out the Facebook page here: Joe's Team

Here's our team picture from Newport, taken by legend Michael Lebowitz of the LongRun Picture Company:
That's me in the front, second from the right just next to Jeanine Miller. 

Tuesday, June 10, 2014

Courage and Honesty

Monday after the Newport Marathon weekend, I had my last appointment with my neurologist, Dr. Lippincott.  I bought him a copy of Wild, From Lost to Found On the Pacific Crest Trail, by Cheryl Strayed.  I wanted to send him off into retirement with some light reading (har har).

What is it about this book that speaks to me?  I have bought it for so many people now.  I tell everyone I can that they should read it.  Maybe it is her actual journey, her struggle.  Maybe it is the transformation that takes place over this very measured and deliberate period of time.  Maybe it is just a book about a lady that finds a need to go out and do something unexpected and she actually does it.  Regardless, I'm glad Strayed found the honesty and courage to write it.  I'm even more glad that she had the courage and insanity to have her trek out there in California and Oregon.

Running a marathon with an unknown variable like MS is like that, in a way.  Courage and insanity to actually do.  Courage and honesty to tell the tale.  I take no pride in what I recounted to you in my struggles in the Newport Marathon, and yet, I told you.

So, book in hand, I went to bid farewell to my favorite neurologist, the second brain doc I have witnessed retired since my diagnosis.  I was so sick when I first started seeing him; the interferon slowly rotting my skin where it went in, and squeezing me senseless with each day I stayed on it.  I commend people who have stayed with their medication for many, many years.  Dr. L took me off of injections and gave me the opportunity to try something else.  My body responded by running and I have been running ever since.  My diet has slowly changed to fit my activities and my spirit has been smoothed by the rough roads and bumpy trails I have skimmed along in so many different shoes I have now lost count.  Dr. L gave me a chance to at this thing I have loved.  Running.  And there I was, offering him in return a send-off gift of courage and insanity; of courage and honesty.

What I wanted in return was honesty from him.  What I was afraid of most of all was that he would say--of my Newport experience and running in general--that I was using up all of the good mobility that I had left, spending it like a drunken sailor in port for one night, only to regret and need it a little while later.  My Newport experience had erased the phone call from his assistant the week earlier saying "no new lesions on your scan."  Instead, I interpreted that as a different form of disease progression.  What he said instead was this (and he says this just about every time now):

"I think we, that is to say you and I, have paid close attention to your disease and to you.  I think this far out from stopping the meds..." here he paused and looked across the room at Dave and then back at me.  "How long have you been off the injections?"

"Four years," Dave answered for me.

"Four years," I echoed.

"Wow, that's great!" The doctor emphasized his enthusiasm for my sake, knowing that I often doubt how well I am doing and have done.  "Some in my field have even speculated there is a benign form of MS and maybe that is what we are dealing with here. Of course, how can we know? In fact, many people, even those on very strong drugs, still continue to have exacerbations, and who's to say you wouldn't had you continued.  There's is no way of knowing with MS.  But you have done exceptionally well." (Of course, I paraphrase here, but my husband says I got the gist).

He was smiling though and nodding his head in a way that I knew I would miss once he retired, confident and courageous when I did not feel it just yet.  He continued.  "You will continue to get your scans and continue to do your running and we'll see.  But I have no reason to think that you will have any sudden and serious negative effects from your disease...anytime soon, and maybe ever."

I know it's not a cure. I know he did not (could not) proclaim me well.  But I did know a little honest hope then in that moment.  And that moment was all that mattered.

Here's what else I know: I have not had any significant changes in my lesions in my brain or spine in eight years.  I have also not experienced any exacerbations since coming off of the injections four years ago.  Instead, in four years, I ran three marathons, seven half marathons (Dave and I are not sure) and countless 10ks, 5ks, and other distances, not to mention the training, the cross training, and the changes in diet and attitude.  In all that time, something has been working.  Something has told my immune system to stop attacking my brain and let me be.  Maybe it is just for right now, but I'll take it.

This is my trek.  This is my journey of self discovery and healing and it would be selfish if I didn't tell you how, or why, or even share my setbacks, as painful, embarrassing, as uninspiring as they may be to me.

Honesty.  Courage.  One more step.  This is my need to go out and do something unexpected and you are my witnesses as I actually do it.
 The Oregon Marathon
The Oregon Marathon logo

I am now training to run The Oregon Marathon on September 13th in Mt. Angel.  Three months to go!  Please check back to see how it's going.  Better yet, sign up and run with me!  http://www.theoregonmarathon.com/

Thursday, June 5, 2014

Newport Play By Play, One Step at a Time

Hello Bees!

Here's my play by play from the Newport Marathon last weekend.  I picked up my packet at the Embarcadero, got a quick hug from my coach Joe Henderson, and even took in a few extra pointers from pacer Jeff McKay.  Then, off to our hotel to settle in. Across from The Waves, we loaded up with pasta at Darcy's condo overlooking the ocean and beach.  Stephanie joined us a little late, but she got there just in time for dinner.  Darcy had made a lovely lasagne and salad and there were treats and bread.  I made...plain wheat pasta.  It was just perfect.

That night, I felt content and confident, almost like nothing could stop me.  I was hydrated and strong and invincible!  I am not sure what went wrong. 

You know how some days you just have a bad running day?  Newport turned out to be that for me.  It started late the night before when I found I couldn't sleep.  I was actually a little over hydrated and had many trips throughout the night visiting the bathroom and regretting my last chug of water.  By the morning, I was so keyed up that I wondered if I had slept at all.

I met Darcy at the curb for the trip to the start line and we talked about how we slept (or didn't).  Her husband Lloyd commented on how warm it was and I took note.  I thought about leaving my jacket, but my pockets were loaded up with Gu packs and chocolate covered coffee beans and I did not want to rearrange everything.  I decided if need be, I would tie the jacket around my waste.

When we got to the finish line, I met up with Jeff McKay again.  Jeff was the 4.5 hour pacer, my goal for finishing.  My last PR was 4:49 and I had trained pretty hard from the McKenzie River Half on, so I figured it was in the bag.  Soon the gun sounded and we were off.  Steph was also pacing for the 4.5 finish and she and I were orbiting Jeff like happy little moons.  We went around the charming little town of Newport.  Jeff let us know about the turns and curbs and we followed along like good little pigeons.  We passed under the marvelous bridge at Newport, made our way along the waterfront and marina, passed the Yacht Club, and Jeff pointed out where we would soon be finishing. Then we were off along Yaquina Bay.

This is where everything I had been reading on steeling myself against the distance would hopefully pay off.  I felt pretty strong, but I did notice right away that it was hotter than I expected.  It was also humid.  And, to make matters worse, the street we ran along was so caddywhompas and off camber that my left knee was starting to feel it.  I thought about slowing but was afraid if I let my pacer go, I would not regain my nerve.

There is a negative psychological impact to being in a run and having everyone passing you.  The opposite is true if you are in a run and passing a lot of people.  I experienced the latter in Portland in 2011 and earlier this year at the McKenzie River Half.  I did not want to have the negative version of this experience just then, especially not so early in the run.  Later I would regret not backing off.  The other mistake I made was not walking at water stops.  In all of my past long runs, both marathons and half marathons, I made it a point to walk at the water stops.  Now I thought if I walked I would lose my pace group and to me that spelled defeat.

Then, disaster hit at about mile 9. I had to pee.  At first, it was just a mild nagging, but as I ran along each step brought a bounce to my bladder that slowed me.  We had just passed a porto-let and I was starting to look for a squat spot (sidebar: I realize this is crass, but there is no other way to tell it).  With all of my bouncing along--and I assure you I hardly do bounce because of my Chi Running training--I slow, the pace group getting further and further ahead of me.  Finally, I came to another water stop and they had no bathroom.  The course marshal said there was a stop just a little ways ahead but duty called right then and there and I ran behind a parked truck (thank god there was a truck there).

I wanted to include this horrible part of my story for a few reasons.  One is that I hardly ever have to go on a long run.  I have read that when you are in on a long distance, your body will often turn off certain mechanisms in order to get you through your task.  This was not the case for me that day, as it had been on so many other runs (including both of my earlier full marathons, having never stopped once!)  The other reason I bring this up is that once I started running, the physical distraction of having to relieve myself now removed, I realized how hot I really was.  I also felt the chafing start under my arms.  My husband was at the half way point with a new shirt and a group of cheerleaders (my kids and Darcy's family) but I would have to get there first; and if you've read any of my past blogs, I have a very hard time running in the heat.

Just to clarify a bit more about the weather conditions, it was not traditionally hot, no.  Instead, it was mildly humid with a headwind gusting in mighty bursts.  And, of course the sun came and went, popping out from behind a cloud and sucking my energy dry.  My pace slowed and then stopped, turning into a defeated walk.  All the while, teammates passed smiling, encouraging, asking if I was okay.  I feared I was not.  I wasn't even sure I could get to the halfway point.  How is it possible that on the training for this very marathon I had my PR in a half marathon and yet here I was crawling around the off camber road, knees weak and head light.

Fear festered turning into the thing that grips my chest when I think my MS is winning.  But just then the clouds moved in and the energy came back. Before I knew it I was coming up on 13.1.  There was Dave and all the kids running out to meet me.  I changed my shirt, drank water, removed the jacket from around my waste permanently, and then I was off.  I felt fresh and rejuvenated.  I might not get my PR but I could at least get it done in under 5 hours, and that would be something.  That became my new goal.

By now, much of Joe's Team had reached the turn around at Mile 15 and were headed back.  I saw lots of the team, waving, exchanging encouragement.  Then I saw Jeff McKay, our 4.5 hour pacer.  He was solo, all of his little moons had fallen away.  Stephanie passed a little while later and she looked great.  I was so excited for her, her first marathon!  I thought of all the miles she and I had put down together and I imagined how it would feel for her to cross the finish line.  Then, the sun came out again and stopped me in my tracks.  As this happened, I realized I had to go pee again!  By now, the turn-around point porto-lets were in sight and so I jumped into one.  Once inside I made the mistake of sitting.  I never sit in those things, even the cleanest ones, yet, there I was sitting on the seat and relishing the rest.  I could feel how much my IT Band ached from the tilted road, the sensation of a toenail coming loose brought a new pain, and the tingling in my swollen fingers told me I was having hydration issues.  I forced myself to stand and get back out on the road.

As I re-entered the stream of runners I realized that the 5 hour team had caught up to me.  They were encouraging and optimistic.  I remember Dameri from Joe's Team saying "come on, you can do it" and I did not believe her.  For the first time in the race, I did not believe that I could.  Here I thought about Joe Henderson.  Joe always tells the group of runners when we first start that he has only had one person not finish (or 99% completion rate or something like that) and I did not want to be the runner to change that statistic.  I pushed myself to run, but my toe ached and my legs hurt and I watched helpless and the the 5 hour group disappear around a curve.

Then it was just me.  There were a handful of people around me, pushing like I was to run when they could and offering each other encouragement when they could.  As I came up to 17 Miles, Dave was there with the kids, smiling and running along.  He gave me water and they walked with me for a bit then I told them to let me go because having them with me just made me want to walk more.  So they went back to the 17 Mile post and got on the shuttle bus.  the shuttle bus passed me and the driver slowed and asked if I could hear the cheering squad in the back.  I nodded and gave the thumbs-up. Then the driver got a very concerned look on her face and she asked" Are you okay?"  I did not think I was but I smiled and answered yes and she drove off.  I could see her face in the side-view mirror looking back at me for a very long time.

Now when I say that sometimes a run is one water stop at a time, one mile at a time, one step at a time, I never thought it would be as true as it was for me that day.  Each step was a new effort.  I tried to clear my mind.  I tried to let myself walk.  I tried to focus my breath, hearing the yoga's teachers voice reminding me in my thoughts.  Nothing was doing the trick.  To make matters worse (oh yes, it gets worse) the wind had shifted and I was now fighting headwinds and gusts again.  At least the wind had a bit of a cooling effect.  I noticed as I neared Yaquina Bay, I was running a little more.  The temperature was better but the pain in my foot was becoming unbearable.  At around mile 21 I saw a few police cars and some uniforms and I thought to myself, I could just tell them that I am done and they would drive me in.  I could sit, drink water, maybe even cry without having to catch my breath, but then I thought about my last blog.  I thought about Samantha.

I said I would do this run for her.  Now, how would it look if I turned around and told her that I couldn't finish this one.  Would the gesture still have value?  Would it mean something new to her?  Something defeatist and terrible?  Then I had this image of giving her my medal.  She was planning to come and visit the next weekend and I wanted to give her my medal.  Usually I just give my medal to my kids.  They think they're fun and cool.  But the image that had in my mind of giving Sam the medal was palpable.  I couldn't shake it.  As my attention came back to the task at hand I realized the police cars were far behind me and that I had started running again.  I checked my pace and I was back up to 10:30.  I slowed to see how long I could keep it up and I found a sweet spot.  My toe hurt, the IT was screaming, but I was running.  And I kept running for a while.

Some of my favorite games to play in my mind on a long run are counting my steps.  I can only count on one side otherwise it messes up my gait.  Forty-two, forty-three, forty-four.  I'll get to one hundred on one side and then start counting the other.  This worked as a distraction from the pain for a long while.  I kept my eyes out for the bridge.  Each mile post I passed made me feel renewed.  I was sure that my longest walks were behind me.  And they were, too.

I cannot describe the feeling that I experienced when I was at Mile 25.  I remembered seeing Mile 25 in Portland: Joe was there cheering and offering hugs.  Mile 25 in Eugene with Darcy next to me running me in, reminding me that I didn't have to be great to get there; I could finish even if I felt lousy.  Then I remembered my last mile at my first Half Marathon, I was with Stephanie Gray.  We were new friends and we were new runners and we were floored that we had come so far.

Before I knew what was happening, I was running uphill.  Newport Marathon has an uphill finish.  It is a long and slow uphill but I wasn't going to let it beat me.  I kept running.  Thoughts of walking crept in but people were cheering.  One person said "You inspire me!"  I wasn't sure why because I wasn't even wearing my "I have MS "shirt.  then I realized that just the act of completing a marathon is inspiring.  I am not related to anyone who has ever run so far.  I had only met a marathoner in my early 20s.  Until then I thought the activity reserved for post-Olympians and athletes.  Yes, what I was doing at that very moment was inspiring, MS or not.  And the fact was, I had done this three times!  I might limp across that finish line but it was close enough to see soon, and by God or grief I would get there!

The hill turned and I started to go down.  I had to watch my speed.  More people were cheering.  In the crowd at the bottom of the hill, I saw my husband and girls.  Dave was waving and I motioned for the girls to come out on the coarse with me and run me in.  They did, lining up with me and pacing me to the finish.  I heard my name.  I saw my coach.  Noises and flashes and sunlight. Then Joe said something about it being a tough run for many.  I clutched the medal around my neck and thought of Sam as my family moved me to the shade on a nearby sidewalk.  And then I collapsed.

As I lay there staring at the overhang, my thoughts swirled.  My girls brought me bananas, water, Gatorade, something bready (or maybe I am thinking about things that came later).  Then Stephanie was there.  I congratulated her and watched her looking around and taking it all in.  Then, my leg cramped, which had never happened to me after a run so I knew I had hydration issues.

What I took away from that experience is to not allow my instincts to be overruled by fear.  It would have been fine for me to walk at the water stops.  It would have been okay to slow down if` I thought the weather might become a factor.  Maybe even use a different supplement.  For all of my past long runs, I have sworn by Shot Bloks, Margarita flavor because of its high sodium.  In fact, now that I think of it, I was running with an untested Gu I had never used before.  Also, I thought about new running shoes during a 19 mile training run and pushed the thought away.  That would have been a good time for me to invest in new shoes (listen to the subtle language of your feet before they start screaming at you!)

But I also learned that I can do things even when I am fairly certain I can't.  I have the best darned running team in the Pacific Northwest!  My family is the greatest cheering squad and pit crew to ever grace the sidelines of any sporting event ever.  And, I want a do-over.

So, now I'm going to train my butt off and hit marathon number four on September 13th with Joe's Team at Mt. Angel, Oregon for The Oregon Marathon.

But, of course, more on that later...

Here are my girls running me in at mile 26.05

Steph and I standing (barely) in the winners tent exhausted but happy