Making a Difference: How Soon is Now?

HOW SOON IS NOW?

When I was running recently, the lyrics to one of the songs on my Playlist were “How Soon is Now?”

Since I became a Shot at Life Champion in 2013, and a Champion Leader in late 2014, I have learned a lot about vaccine-preventable diseases and the potentially fatal barriers children face in many countries. I have met incredible people, and seen I have seen government “at work.”

If it were up to me, I would take a plane across the world and personally administer a child in Nigeria, Afghanistan, or Pakistan, the three countries where polio still exists, a life-saving vaccine. I would put together the $20 worth of vaccines that will give lifetime immunity from measles, polio, pneumonia, and diarrhea to the children who are currently dying every 20 seconds from those diseases and just do it.

The problem: simply vaccinating children is not simple.

Simply vaccinating children takes the intricately coordinated efforts of people in the affected countries, manufacturers who make the vaccines, vehicles who transport the vaccines, copious amounts of funding, and an alphabet soup of accounts and programs including UNICEF, GAVI, CDC, and USAID. “Simply” vaccinating children a world away takes the involvement of us here in the United States. Although there are many reasons, three of the main ones are:

  • the existence of these diseases anywhere is a threat to children everywhere (as we have seen with recent US-based measles outbreaks)
  • prevention is infinitely more cost effective than treatment
  • it is the right thing to do.

As a Champion and Champion Leader, I have had many great experiences in two short years:

Two Shot at Life Summits in Washington DC

Making a Difference: How Soon is Now?

With fellow champions Nicolette Springer and Sili Recio in March 2014

Meetings in the Washington, DC, offices of my Senators and Representatives

Meetings in the Tallahasssee, FL offices of my Senators and Representatives

In-Depth training on vaccine-preventable diseases, advocacy methods, and communication strategy

Meeting Jo Frost of Supernanny fame

Making a Difference: How Soon is Now?

Meeting other Shot at Life Champions who are hands down among the most committed, intelligent, creative, funny people on the planet

Making a Difference: How Soon is Now?

Publication of two Op-Eds, including this one, and a Letter to the Editor in the Tallahassee Democrat

An appearance on WTXL to discuss World Immunization Week 2014 (tune in again on Monday, April 27, between 6 am and 7 am for this year’s appearance!)

In the midst of all these opportunities, I can grow frustrated though. It is easy for doubt to seep in:

  • How will this lovely hotel luncheon/fancy hors d’ouerves event/[insert very first-world goodie or experience here] make a difference?
  • How will that e-mail, letter, phone call, or tweet I sent to my legislator matter?
  • How can I, “just a mom,” do anything for that child in Pakistan?

I recently read A Simple Idea With Huge Potential by Mark Miller, and his post helped me channel those worries in a different, more productive way. Mark described a plan to accelerate his team’s performance by “assigning a champion to each large body of work.” Among the attributes expected of his “champions” was this:

Ensure the work gets done. 

I may not be able to travel to Pakistan to vaccinate a child personally, but I can develop the expertise to make sure our government supports the President’s budget fully so that funding and support for critical global health and global vaccine programs is sustained.

I can inform, advocate, and fundraise for the cause of global vaccination.

I can recruit fellow committed, intelligent, creative, funny people to join me. Heck, you don’t even have to be funny!

We are holding a Champion Training this Wednesday night, April 29, from 8-9:30 p.m.. Please join us, even if you aren’t sure you want to commit to being a champion. It will be a fantastic opportunity to learn more! Click this link to sign up and get on the distribution list for the April 29 call.

I may not be able to completely fix the problem now, but I can commit to being a champion for ensuring the work gets done.

WHO WANTS TO JOIN ME?

Making a Difference: How Soon is Now?

Shot@Life–UN Foundation, Mozambique, Wednesday, June 1, 2011 (Photo/Stuart Ramson)

I am joining my fellow Shot at Life Champions in Advocate 2 Vaccinate, a coast-to-coast challenge for global vaccination that coincides with World Immunization Week (April 24-30). I am pleased to be joining several of them in a blog relay. Here’s the lineup:

Friday, April 24: Jennifer DeFranco with Let the Relay Begin…S@L, A2V, and Me! 

Friday, April 24: Nicole Morgan with Want to be a Super Hero?

Saturday, April 25: Nicolette Springer with Advocate to Vaccinate: You Can Be a Champion! 

April 26 – Pam Brown Margolis with It’s World Immunization Week! Let’s Keep My Little Readers Healthy #vaccineswork #WIW15 and ME!

April 27 – Cindy Levin with Many Actions Save Many Lives

April 28 – Anne Parris of Not a SuperMom

April 29 – Ilina Ewen of Dirt and Noise

April 30 – Andrea Bates of Good Girl Gone Redneck

Felisa Hilbert also wrote about her champion experience in The Power of One.

Making a Difference: How Soon is Now?

Is Your Mind “in the Boat”?

Is Your Mind "in the Boat"?I just finished reading a thoroughly enjoyable book: The Boys in the Boat: Nine Americans and Their Epic Quest for Gold at the 1936 Berlin Olympics. I didn’t love it quite as much as I loved The Perfect Mile, but that may have to do with the fact that I am a runner, not a rower. I first listened to this book on audio but then picked up a paperback version. I am really glad I did, because the paperback had pictures that really helped me understand the scale of the details discussed in the book: the size of the shells, the size of the rowers, the vibe of the times in which they lived.

Mind in Boat

What I really, really loved, from this book was the passage about the team’s mantra that got them through challenging times and, ultimately, to the outcome of their race for an Olympic medal in 1936. This mantra was “mind in boat.” The University of Washington team began using it in 1934 when the inability of individual team members to focus threatened to throw off the unity (and therefore productivity) of the entire team. The coxswain, George Morry, would, according to author Daniel James Brown, shout, “‘M-I-B, M-I-B, M-I-B’ over and over to the rhythm of their stroke. The initialism stood for ‘mind in boat.’ It was meant as a reminder that from the time an oarsman steps into a racing shell until the moment that the boat crosses the finish line, he  must keep his mind focused on what is happening inside the boat. His whole world must shrink down to the small space within the gunwales. He must maintain a singular focus on the rower just ahead of him and the voice of the coxswain calling out commands. Nothing outside the boat — not that boat in the next lane over, not the cheering of a crowd of spectators, not last night’s date — can enter the successful oarsman’s mind.”

Why Trusting Your Team Matters

There is a passage in the book when George Yeoman Pocock, who built the shells used by the University of Washington (and a significant number of championship teams) from 1913 until the early 1960s, is speaking with Joe Rantz, one of the team members who has been struggling. Pocock is so much more than a builder of shells; he loves the sport and understands it (and its competitors) intimately. After discussing a few pieces of technical feedback about the way Joe could improve his mechanics, he got to the heart of the matter: he had observed in Joe a tendency to act like he was the only oarsman in the boat. While explaining why this approach was detrimental, as Brown writes, Pocock said: “When a man rowed like that, he was bound to attack the water rather than to work with it, and worse, he was bound not to let his crew help him row.”

[Note: if you obtain the book, this passage is on pages 234-235. It’s too long to quote in its entirety here, but it’s profound.]

Pocock went on to explain the concept that rowing is like a symphony, with every player having a role. If one player’s volume or tempo is out of sync with the others, even if it would be lovely as a standalone piece, it destroys the beauty of the piece as a whole. He ends the talk with these two gems:

If you don’t like some fellow in the boat, Joe, you have to learn to like him. It has to matter to you whether he wins the race, not just whether you do.

AND

Joe, when you really start trusting those other boys, you will feel a power at work within you that is far beyond anything you’ve ever imagined. Sometimes, you will feel as if you have rowed right off the planet and are rowing among the stars.

LGB

One point at which the team’s progress threatened to unravel was when they lost sight of their “MIB” approach. One particular group of rowers, when vying to be the team selected to compete for the national championship (and the eventual opportunity to compete in the Olympics), changed their mantra to “LGB.” When asked, they told people it meant “Let’s Get Better” but in actuality it meant “Let’s go to Berlin.” The problem with that choice is that it took their minds exactly OUT of where they needed to be: in the boat.

Is Your Mind "in the Boat"?

Photo Credit: ClipArt Panda

Why This Resonated With Me

I have always been a little bit sentimental about boats and nautical themes. Maybe it comes from growing up as a Navy kid. I incorporated a “ship’s wheel” into Wayne Kevin’s baptism banner:

Is Your Mind "in the Boat"?The one post I have written in the almost-year since I left my job had a “boat” theme.

This “boat book” carried messages for me, including the beauty of teamwork and the importance of not relying only on your own talents and strengths to make a project successful, but learning to be in sync with others.

Most of all: the “MIB” image spoke to me. As much as I tried to find my focus in the last few years at Healthy Kids, it eluded me. Although I think everything happens for a reason, I can’t escape the idea that it is possible to find yourself in the totally wrong boat. My body was in one but my head and heart were either back on the dock or in a different boat entirely.

This book is not a suspense novel. The full title basically gives away the ending (from the standpoint of the Olympic outcome). The Perfect Mile, that other book I loved so much, wasn’t a suspense novel either. Who knew hours upon hours of audiobook about men going 4 times around a quarter-mile track could carry so many non-running messages?

For me personally, suspense infiltrates my journey to find a boat my mind and heart can occupy simultaneously, fueled by the gift of a team I can trust while I row toward a power beyond me.

Have you ever experienced a life voyage with “MIB” moments? Tell me about it!

Target Giveaway!

Target

My most recent post was a little on the “heavy” side what with all my medical drama and whining about not being able to run, so let’s change things up with a good old-fashioned giveaway!

GIVEAWAY DETAILS

Prize: $300 Target Gift Card

Giveaway organized by: Oh My Gosh Beck!

Rules: Use the Rafflecopter form to enter daily. Check the Rafflecopter for the link to our other Target gift card to double your chances of winning! Giveaway ends 5/12/15 and is open worldwide. Winner will be notified via email.

Are you a blogger who wants to participate in giveaways like these to grow your blog? Click here to find out how you can join a totally awesome group of bloggers!

a Rafflecopter giveaway

green pen two cropped

From Human Microchip to EP Study and Beyond

In the 24 hours leading up to my EP Study on Monday, I asked myself quite a few times if it made sense to go through with the procedure, especially since my high heart rate episodes only occurred when I was running. In other words, even though the risks are minimal, is it worth having a doctor thread a catheter up through my groin into my heart in order to figure out what was going on in there and to possibly “ablate” any problem areas?

For a recap of the history leading up to Monday, click here.

EP Studies

Now let’s talk about EP Studies.

To get to the point of today’s blog, we will fast forward past the referral process to get to the electrophysiologist, the initial appointment with the electrophysiologist, the implantation of my loop recorder, appointment number one with the electrophysiologist’s nurse, a between-appointments phone call with the nurse where I was instructed to begin taking two baby aspirin every night (I was already taking one) and appointment number two with the electrophysiologist’s Physician Assistant (PA), where I was given the choice of medication or an EP Study with Ablation. Because I was hesitant to settle for a medication-only option (I was concerned medication would make me more tired than I already am all the time and would not yield any answers), I agreed to proceed with the EP Study and Ablation on the premise that a) at least I would have answers and b) if I did get an ablation, I would be able to return to running with a likelihood of less risk, more satisfaction, and a relieved mind.

I reported to the hospital at 7 a.m. on Monday, and did a combination of laying around, prepping (there is some cleaning with grown up baby wipes to be done), having a baseline EKG taken, having baseline vitals taken, chatting with the anesthesiologist, a visit from the PA, and a final visit from the electrophysiologist before the process began.

From an anesthesiology perspective, the goal with an EP study (at least with this team) was not to keep the patient completely “out.” I did have them promise not to share any crazy tequila stories I told while I was in and out (apparently either I didn’t give them anything to work with or they are very discreet people!). I was given oxygen. I remember nothing of the actual insertion of the catheter. I remember significant parts of them manipulating my HR to try to replicate the issues I have been having. One of the cool parts of an EP study is that they essentially “GPS” your heart. I had stickers all over my chest that were a part of the mapping process (and is it a good thing when they say they don’t have much real estate to work with?!). The anesthesiologist told me that he could tell at a certain point that I was really getting anxious (and I was trying to stay calm but I guess “trying” is a relative thing in that situation) so he put me farther out.

Fast forward to the recovery room. and beyond. I remembered how still Wayne (my husband) had to be after his catheterization, and how we had to bring Wayne’s dad back to the hospital when he began bleeding from his insertion site after a catheterization so I was determined to be the perfect patient on that front. But I think the process and technology have both improved. Although you are told to remain very still, there wasn’t a nurse yelling at me when I moved my head a millimeter (as one did with Wayne).

All of that to get to this answer:

I do not have Atrial Fibrillation (this is mostly a good thing!). My issue involves SupraventricularTachydardia (SVTs). The good news is that SVTs, even though they feel totally bizarre and abnormal, do not usually lead to adverse cardiac events or fatalities.

Dr. Silberman chose not to ablate – he found two “hot spots” that activate at around 160 bpm, but they return to normal as my HR rate escalates and several other spots activate. It was taking so much medication (isuprel) to get my HR up enough to replicate the issue that they were afraid they would run out mid-procedure and apparently there is a manufacturers’ shortage of it so they couldn’t get more. One option is a different (more involved) procedure with a balloon that can discover/ablate more surfaces at once, but that is not necessarily that obvious route to go. For now, the recommendation is that I take a beta blocker before running and keep my HR to below my zone 4.

Here are the takeaways for now:

Technology is pretty awesome

I am still in awe at what medical professionals can find out via technology. From my Garmin which provided preliminary data about the patterns of my heart rate issues, to the loop recorder that provided more specific information, to the map of my heart and its electrical patterns, we have access to so much data.

Physicians with good bedside manner are pretty awesome

I am grateful for the way in which Dr. Silberman has explained everything at each step of the way. I appreciate the fact that he respects the role of running in my sanity (even though he does say, repeatedly, “you know, you don’t have to exercise at 170 bpm to be fit”).

EP Studies

Dont ask me to interpret but this is the whiteboard from Dr. Silbermans explanation to Wayne.

Good nurses are pretty awesome

I am a little fuzzy on my ability to evaluate the performance of some of the nurses, but all the ones I was “with it” for were great. They were patient, answered my questions, and provided plenty of attention (along with a nifty “discharge note” (below) and a follow-up phone call the evening I was discharged. My last nurse had an interesting mantra — “be assertive” — she said it ten times if she said it once. She’s right of course but it still struck me as interesting.

EP Studies

Remember that post I wrote about how hard it is to get a wheelchair at TMH?

I have to admit, when I remembered (duh) that I would need one of those very same wheelchairs to transport me out of my room and down to my car, I was a little afraid the staff would see my name and all of a sudden develop a very lengthy d e l a y! But my complaint was never about the transportation staff themselves, just the challenging process of getting a wheelchair for my father-in-law, and I am happy to report my chariot arrived to sweep me away from the hospital relatively promptly.

Frequent naps and permission to “take it easy” are awesome

I was told to avoid running/exercise (sigh) and not lift anything heavier than ten pounds for a week. As much as I have missed my usual high-intensity, rapid-fire life, I have to admit having permission to take it easy has its bonuses too. I have probably taken more naps in the past week than I have in the past year (or five…). I think I needed the rest.

Not running is not awesome

Double negative that may be … but if you know me, or if you have had your own period of enforced non-running, you know what I mean. All of a sudden everyone’s off-hand remarks on social media about their “quick three-milers,” “couldn’t help signing up for another race,” and “awful run but I am glad I did it” seem like they are coming from a completely different universe. My paper workout chart, my Training Peaks, and my Daily Mile are all completely blank this week. So is my endorphin quota. It’s odd and not awesome.

So much of your running mojo is in your head

This has messed with my mental status. As much as I have advocated endlessly for the power of the back of the pack, for the fact that every mile matters, for the fact that runners should all support one another, the truth is that I have felt very close to the edge of being excommunicated from the runner fraternity (and I know if anyone else said all that to me I would immediately jump on them and tell them the thousand reasons why they still belong). I’m just keeping it real here. I have finally gotten a little tiny bit of traction and credibility as a Fitfluential Ambassador and am having to work hard to convince myself I still belong.

Not running messes with your nutrition

One beautiful thing about running combined with relatively clean eating habits was that I had a little wiggle room to treat myself to “fun food” occasionally. A few weeks prior to the procedure I announced to my coach that I was “tired of logging.” although I knew what to do to maintain my weight, I also know how easy it is to wander once you are no longer making yourself accountable. Logging and reporting my food logs to my coach every night incentivized me to, for example, have salads on hand for lunches, to skip bread in the evenings, and to keep the long-term goal in mind.

And I think that’s the rub now: there is no long term goal now that I have ditched the sub-30 5K. The things I run for still exist: Gareth, Charity Miles, my team at KR Endurance, my running friends, my health and my sanity.

The challenge is getting my head (and my heart) back in it.

EP Studies

****NOTE: I really hate talking endlessly about myself like I have ended up doing throughout this cardiac health  journey. I continue because I know it has helped me to read of other people’s experiences. It’s a scary and lonely feeling to feel like “the only one” facing this type of issue. A lot of people have helped me, especially Mary Jean Yon. While I don’t feel ready to be anyone’s lifeline yet, it is important to know you are not alone, and to be your own most assertive advocate when it comes to your health. That’s why I keep talking about it. Maybe next week I’ll post about dancing unicorn kittens or something lighter!

Toastmasters: An Open House Invitation

toastmasters

Frequently, when I mention my involvement in Toastmasters, people express an interest in participating themselves.

This week, there’s a perfect opportunity to find out what it’s all about — our club (Podemos Hablar) is holding an open house!

Here are the details:

Date: Monday, April 13, 2015

Time: 6:00 p.m.

Where: La Fiesta Restaurant (2329 Apalachee Parkway, Tallahassee, Florida, 32301)

(Note: one reason I was attracted to this particular club is that it is a Bilingual Toastmasters Club (Spanish/English). It is especially helpful for people trying to improve their Spanish (or for Spanish speakers trying to improve their English). But don’t let that stop you from joining our open house — there are speakers of all levels.)

If you have any questions, don’t hesitate to let me know!

toastmasters banner

En Español*:

Frecuentemente, cuando hablo de mi participación en Toastmasters, todos expresan su interés en participar ellos tambien.

Esta semana, hay una oportunidad perfecta para descubrir de qué se trata – de nuestro club (Podemos Hablar) está ofreciendo exhibición publica!

Aquí están los detalles:

Fecha: Lunes, 13 de abril 2015

Hora: 18:00 (6:00 p.m.)

Dónde: La Fiesta Restaurant (2329 Apalachee Parkway, Tallahassee, Florida, 32301)

(Nota:.. Una de las razones que me atraido a este club en particular es que este club es bilingüe (Español / Inglés). Es especialmente útil para las personas que tratan de mejorar su español (o para los hispanohablantes que tratan de mejorar su Inglés. Pero no dejes que eso te detenga de asistir la exhibición publica – hay hablantes de todos los niveles).

Si usted tiene alguna pregunta, haz favor de comunicármelo.

toastmasters juan

Juan, Past President.

 

Shaking hands with Teressa, our club Vice President (and my mentor) after I spoke.

Shaking hands with Teressa, our club President (and my mentor) after I spoke.

“The limits of my language are the limits of my world.”

(Los límites de mi lenguaje son los límites de mi mundo.)

Ludwig Wittgenstein

(Thank you to our club past president Juan for helping me with the translation. I take full responsibility for any errors that remain. // Gracias a nuestro presidente pasado del club Juan por ayudarme con la traducción. Yo soy responsable de los errores que quedan.)

Time for Peace

I have a blog post in my head that hasn’t made it to the “page” yet. This is partially because as much as I would like to process via the blog some of my parenting concerns, my blog is a public place and both of my kids are on social media so it simply doesn’t seem fair to them to post the one in my head.

The blog in my head would be about the challenges of coming to terms with your child not being who you envisioned them to be, but rather who they are meant to be.

Even as I write this, I am feeling hypocritical because I am the first to post or share those pieces of content on social media that encourage acceptance, appreciating people for who they are, and embracing all different kinds of abilities.

In all honesty, as my son comes closer to turning 16, I am still not sure what to do with the part of myself that wanted to be a “baseball” mom (and it didn’t have to be baseball … name any sport or activity that involves endless practices, uniform purchases, trips to matches, etc.). Baseball came and went. Football came and went. Gymnastics came and went. Soccer came and went (fleetingly). Speedskating came and went (but is still sort of on the radar screen). Running and triathlons came and went (but hope springs eternal in this running mom’s heart that he will find joy in running again someday).

Time for Peace

Breakfast on the Track 2010

I have also struggled with my son’s lack of deference (not that being deferential has been the way to go for me, in retrospect) to elders. With my father in law living with us for the past ten months, it has been a hard time in many ways. My son has shouldered his own share of the burden in ways I perhaps have not sufficiently thanked him for, but I still cringe when he is short with my FIL or tells me “not to engage” when my FIL is combative (for the record, he is right but still…).

Time for Peace

For one moment today, that all went a little bit out the window.  After Fr. Jim gave a homily about “things you can’t unsee” (which this visual learner appreciated since it had graphics to accompany the message!), it was time for the “passing of the peace.”

As we were greeting the other attendees, I was shaking hands/hugging the fellow attendees but there was an elderly gentleman seated directly in front of me who clearly had mobility issues. He had stayed seated during the Passing of the Peace. It was easy to miss him … to not make the effort to get his attention, make eye contact, shake his hand.

BUT that is exactly what I watched my son do out of the corner of my eye. Wait for the gentleman to see that Wayne was waiting on him, then shake hands and exchange a wish for peace.

On an Easter when our responsibilities for my FIL kept my husband home instead of attending worship with us, when my daughter was at her church home with her best friend and her family, it was a day to put aside “normal” hopes and expectations. In the interaction between Wayne and the gentleman, there WAS a moment when all of the expectations and hopes I have clutched so tightly to my really didn’t matter.

Because the gentleman in the row ahead of us needed something that only my son was prepared to give.

ALLELUIA.

Time for Peace

Easter at St. Luke’s Anglican Church, Tallahassee, FL

 

 

 

MedalGate

I ran the Springtime 10K race here in Tallahassee yesterday. It was my fourth time running the 10K race. It was also my slowest time running this race, not because I am inadequately trained but because I am in the middle of figuring out what is going on with my cardiac health.

After my friend Betty and I crossed the finish line, we walked past a lady standing there with a box of medals. Frankly, I had forgotten that there were medals for the 10K race finishers. When we saw her, I kind of said “oh yeah, medals,” and she explained that those were last year’s medals, that there were no more 2015 medals. I started not to take one, but since I often send my race medal to Gareth, who I run for, I went ahead and took one. Betty followed up on the woman’s admonition to “ask someone” about getting a 2015 medal and through Betty’s inquiries, we figured out that there were no more medals.

11037559_10152633420111315_8217159478330548988_n

I didn’t really think too much about the medal situation. I was happy to enjoy a gorgeous day, to be wearing the TeamRWB emblem as part of RunAs1, to find a compromise between the all-out runner I really want to be and the “keep things moderate” runner I have to be right now.

1669625_10106672458496501_3203885319513636494_o

TeamRWBTally

 

I did jokingly post a picture of my 2014 medal on my Facebook page, jesting that “And if you time things JUST RIGHT and finish toward the end you get to get on the race time machine and retrieve yourself a medal from the 2014 race from the special time traveler box.”

As it turns out, another runner who finished later than me along with her son was very unhappy about the 2014 medal situation, because she had paid race fees for four people, and it was her child’s first 10K. She posted that concern on our track club’s Facebook page, and what I deemed “medalgate” ensued. The entire thread has now been deleted but the categories of comments were roughly:

70%: people offering their medals to her and reassuring her that it would get handled

20%: people telling her to be grateful for the beautiful day and gracious to an all-volunteer operation

8%: combinations of the above

1%: responses from the race directors providing a brief explanation and instructions for how to pursue a resolution privately

0.5%: a response from the original complainant sharing a screen shot of a negative private message from someone who, to put it politely, disagreed with her stance

0.5% a meme

Our track club still has a members only Yahoo list (remember those?). After reading some of the chatter on there, I drafted a lengthy response. I am sharing it here.

Everyone, I have read every single word of the Facebook conversation started when [name] commented about being given a 2014 medal when there were no 2015 medals left today at the Springtime 10K. Some thoughts …

First of all, I think it is incredible (but very typical) of our club that so many people offered to donate their medals (and someone offered to refund her family’s entry fee).

Social media does make it possible to fire off a concern rapidly and publicly without giving an issue time to be resolved more privately. That pattern is here to stay, and I am writing to encourage you to remember that these situations present opportunities to bring someone into our fold.

I can absolutely understand the logic behind responses in the thread encouraging her to appreciate what a beautiful day it was, to cut volunteers a break (amen!), to use this as a teachable moment for her child, to focus on the positive. I agree with all of those statements.

But by the same token I encourage you to remember a time when you were a running outsider. If you are a back of the packer, the time(s) you wondered if you would be the last person finishing a race and therefore wondered if you should even show up at all. It may not be a medal but I am positive for all of us there have been days when we had to incentivize ourselves to get our butts out the door … maybe it was the thought of a glass of wine, the knowledge that we had to report in to our coach, or the hope that we would PR an upcoming race.

I am not a person who really cares about medals that much. I have kept a few from the races that are most special to me. Most of my others I give to the child I run for or donate. BUT for some people it really is “the thing.” For some parents (rightly or wrongly) they may have spent the last few weeks talking excitedly with their child about the anticipation of getting a medal. Adults, too, may  have seen the medal in their mind’s eye when they forced themselves to push one more mile, lift one more weight, pass up the second slice of pizza.

I do understand the challenges of an all volunteer operation, and how a plan which seemed failproof re: medal quantity didn’t work out that way. This year can help us better plan for next year.

I do think if we advertised the fact that every 10K runner would get a medal, we should try our best to make that happen (and I know the many offers to donate will undoubtedly take care of that). In the same way you wouldn’t ask for filet mignon at the grocery store and say “sure” if they said “you’re getting ground beef instead” it is reasonable for people to expect to get a 2015 medal.

I commend the directors on a FABULOUS and well-managed event. I haven’t ever directed a race but by now I am pretty familiar with the moving parts. As a volunteer, I have been chewed out by people when I didn’t have their tshirt size even though they pre-registered (it happens!).

I have been that obnoxious parent advocating too aggressively for my child. I have been the runner sending single spaced two page emails of “feedback” to race directors. Over time I got a broader perspective and learned a) how to give more succinct feedback b) when to give feedback and c) to remember to say thank you.

Do I wish [name] had held off on her negative post until she had tried to get a private resolution? I think it would have been in everyone’s best interests. For all I know, she is one of those people in the world who approaches everything from the negative, and no amount of offers to donate medals, refund her fees, or prove our goodwill can change things.

But I walked away from yesterday’s incident wishing that it had gone differently.

I want [name] and her family to come back to a track club sponsored event. The purpose of this lengthy reply is to remind us all that we can have a role in making that happen, via our words AND our actions.

Happy Running!

Who’s Running for Who?

I applied to be a runner for I Run for Michael (IR4) back in the early summer of 2013. With IR4, runners are paired with people who have difficulty running due to physical challenges. By July I was matched with Gareth, a young man in Pennsylvania. The reason Gareth’s family had applied for a runner is because he has a mitochondrial disorder which makes it difficult for him to expend energy in a way that is equivalent to other boys his age.

Once you are matched, it doesn’t take long before you start dreaming of meeting your match. You share so much, on the private I Run for Michael page, in messages, cards, letters, and other types of communication. But nothing is the same as looking someone you have come to care about in the eyes.

When I started making plans to do the 2015 New York City Marathon on March 15, 2015, as part of Team in Training/Team SOAR, I started googling around for 5Ks in the area where Gareth lives, since it was within driving distance of NYC. Lo and behold, there was a 5K in his town on the Saturday before the Sunday half marathon! The event was the Warm Hearts 5K benefiting the Sam Vlasics Foundation for Heart Defect Awareness

On Friday, March 13, 2015 (yes, Friday the 13th!), I flew to Newark, and took one of the trip’s many buses into NYC. I dropped my luggage at a hotel room of a helpful friend, visited the race expo to pick up my number for Sunday’s half marathon, returned to the hotel room to consolidate my stuff into a small bag for the 5K with Gareth, and headed out to a bus for his town.

I should note that all throughout this traveling, and for days leading up to it, and until the moment my head hit the pillow that evening, I prayed that the 100% chance of rain for Saturday would be wrong (it wasn’t).

Saturday morning, Gareth, his mom Kim and his dad Nick picked me up and we headed to the race venue! Although I have done the race morning/packet pickup drill countless times, it was exciting to share it with Gareth. He wanted to take a “light jog” around the building and I was all to happy to oblige (because moving = warmth and it was quite chilly!!).

We snapped a few pictures before the race (unbelievably throughout the whole day we never managed to get a picture with Gareth’s parents in it — which is a disappointment but I suppose that gives us an excuse to get together again in the future!).

We did a bit of strategizing. Because Gareth’s mitochondrial disorder (MCAD) makes it difficult to use energy for an extended period of time, we decided he would run the first half mile with me, then wait for me to do the loop around an industrial park that followed the first half mile. We would meet up to run in together. Poor Gareth (and his dad, Nick) had the worst part of the deal … standing around in the cold rain FREEZING while I ran (and, sigh, walked some as I was dealing with the heart rate issues that have been cropping up lately).

Finally I made it around to the spot where Gareth was waiting for me. We had a little under a half mile to go. Having seen several pictures and videos of other IR4 children and runners sharing races together, I have to admit I had in my mind’s eye a picture perfect scene of Gareth and me crossing the finish line together, hands raised victoriously (NOTE: the picture perfect scene fantasy did NOT include freezing rain!).

Gareth and I started toward the finish line. He had lots of pent up spirit, having frozen to the bone while waiting for me. As we approached the finish line, my HR zoomed up (the preliminary diagnosis is Atrial Fibrillation but that is still getting resolved) and I had to stop and walk at what was supposed to be the big big moment!!! Given the choice of passing out (not picture perfect) and staying upright but walking, I chose to walk. It was awesome watching Gareth sprint through the finish line. He waited for me, came back to me, and we did cross the finish line together (chivalrous kid, this one!).

Gareth’s family took me out to breakfast at a local diner after the race. We were all happy to be out of the wet/cold weather and to share a meal together. (And yes, this southerner did have to ask what pork roll is!). As we finished up our breakfast, I checked the bus schedule and we came to the conclusion that we should try to get me to the 1:15 bus (which as it turns out is a Sunday bus (read schedules much, Paula?)). Good thing we arrived at the depot in time for me to catch the 12:45 at the last minute (hence the hasty goodbyes and lack of pictures with Gareth’s parents!). I was able to make it back to the city in time for a lovely warm shower and to get ready for a team dinner prior to my NYC Half Sunday morning.

TAKEAWAYS:

CHD

I loved the fact that the 5K I happened on to was a benefit for a Congenital Heart Defect cause. My friend Karen here in Tallahassee has taught me a lot about CHD (and she sent an awesome goodie bag from Broken Hearts of Florida for me to give Dana, Sam’s mom and head of the Sam Vlasics Foundation). Since our family has a history of Long QT Syndrome, we feel an affinity for all causes heart related. I liked helping a cause close to my heart (yes, I had to say it that way!).

It Takes a Village

I started emailing Dana quite some time ago when it appeared I may be able to do the 5K. I explained the situation with IR4, and the fact that we would possibly need to make some accommodations due to Gareth’s MCAD. Long story short: she said “whatever you need, we’ll make it work.” And she did. I am so grateful.

In addition, I am a person who tends to do things by myself first and ask for help second. I made a plan to stay at a hotel Friday night (because frankly, as wonderful as IR4 meetings seem to almost always be, that’s a lot of pressure on two sets of people who don’t know each other yet), and I planned to take a cab from the bus depot to the hotel. It wasn’t a long distance but not really walkable at night. Yelp reviews such as this one left me feeling a little leery. When Kim offered to pick me up at the bus depot, I agreed. We had such a nice visit, and a quick sandwich (no, I hadn’t thought ahead to plan dinner (ongoing joke of the weekend — you’re a veteran traveler??)). It was really nice to visit briefly prior to race morning and get in our first “getting to know you” moments without the race adrenaline playing a part. I know Gareth and family had to wait around for the bus (which was later than planned), leave early on Saturday morning to pick me up, and make other accommodations to make my visit so pleasant. They were awesome.

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You Gotta Have Heart

I was SO disappointed to have an AFib (if that’s what it is!) attack right before the “big finish.” At the times prior to meeting back up with Gareth that I had to talk to keep my HR down, and the times I had to stop and walk right before the “big finish,” all of the negative self talk I have struggled with as I have gotten slower and slower was swirling through my head. BUT of all the people around whom to accept the fact that I had to make accommodations for my health, this was the place to do it. That is Gareth’s life … making adjustments moment to moment to balance enjoyment and the thrill of using energy with the fact that the physical challenges necessitate doing things that don’t necessarily look “active” to unknowing onlookers. (And honestly…the scene of him running through the finish line by himself was priceless to me!).

I Get It A Little Better Now

You can read about mitochondrial disorder. You can tweet about it, try to understand, listen to people’s explanations. I still am no expert, but what I did “get” by being in Gareth’s presence is that like any boy he likes to go places fast. Even a trip to get a napkin involved a sprint or skip. When he and I were starting the race, I explained that I am running slower than usual due to trying to figure out this heart thing and appealed to him to pace me. But of course he wanted to run. Who wouldn’t? The challenge is the pain he may face later if he doesn’t parcel out the way in which his energy is used.

Love Love Love

I am struck, in ways I find difficult to express, with  how much these two parents love their child. Not that they wouldn’t love their child but seeing that love in action, on a day called “warm hearts,” warmed mine. I am sure they think they are just doing what any parent would do, but they do it well and clearly this kid is their heart.

Why is Paula Wearing a Skunk Hat?

This day coincided with the Idiots Running Club Skunk Run. That called for a skunk hat (and skunk shirt, of course). I was a little worried about that until I “got” Gareth’s sense of humor. It all worked out!

Lastly, more pictures:

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Race start (Gareth in blue jacket/shorts, me in pink)

 

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Gareth's Finish

Gareth’s Finish

 

Finishing together!

Finishing together!

Note: The I Run for Michael organization has many more runners waiting for children to run for! For more information, visit the site by clicking this link. (Or ask me! I am happy to answer questions!).

Look Up!

 

chrysler building

I am keeping tonight’s post short. I have a limited amount of time in NYC and will save a proper thank you for everyone’s generous support of my United NYC Half Marathon effort on behalf of the Leukemia and Lymphoma Society for a future post. I also have a lot to say about the joy of meeting Gareth (the young man I run for through I Run for Michael) and will hold that too.

For now, a reminder to look up. When I lived in NYC, I walked everywhere I could. I would peek in the store windows, people-watch, and marvel at the variety of languages and personalities surrounding me. However, days would go by that I would forget all of the “stuff” above. The beautiful, large-scaled, make-your-mouth-fall-open with awe stuff.

We can use a reminder to “look up” figuratively as well as literally. To be precise, I can. I have been struggling with more tunnel vision than I have disclosed to many people. I am not sure what the way out is or how soon it will come, but I know one of the keys lies in “looking up.”

Thank you for the reminder, NYC.

Goodbye, Mary Nell

Mary Nell's Casket Spray

Mary Nell’s Casket Spray

Today, I attended the funeral of Mary Nell.

One of the many floral arrangements was this one:

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When I first saw this arrangement, I was surprised to see seed packets and trowels. They implied there was still work to be done at a time when the focus was on one individual’s perpetual rest.

Upon further reflection, this was the perfect arrangement to marry a celebration of a life beautifully lived and the admonition that those of us who loved her must continue her legacy. One phrase Rev. Peterson used to describe that legacy was “she always remained exactly who she was no matter what was going on around her.”

My memories of being in her home when I was in high school coalesce into a blur of happy/family/poolside/laughter/plentiful food/togetherness all in one. Christmas, as Rev. Art Peterson said today, deserved its own category. There was truly nothing like the ramp up to Christmas at the Archer home, with mountains of wrapping paper, gift boxes galore, and music playing in the background, all tied up in curling ribbon and festivity. I loved being a part of it all. It felt like a second home to me, and being there fed my spirit in a way no other place did.

Now that I am a parent myself, I know the particular sting a parent feels when their child seeks out a “second home” somewhere else despite that parent’s best efforts to express their love. That may be why, despite her overwhelmingly gracious, fun loving, warm, open-armed welcome every single time in my high school years that I showed up, there was also a wisdom behind her eyes that went unspoken.

I don’t know how in all those years I didn’t realize how much she loved butterflies, but now that I do, I imagine her sailing weightlessly on the breeze, showing off her beautiful colors, free of the physical pain that came with the cancer she fought over the last two years and the emotional pain of leaving behind the family she loved so completely.

For her service, I wore this pin given to me by another wonderful woman, my mother-in-law Barb. For several years leading up to her sudden death from anphoto (3) aortic dissection, she gave away her treasures (such as this one). We would find them in our Christmas stockings. A particular piece would be given for a graduation. One by one she was divesting herself of items she loved, on the premise that a) she wanted to choose who some of these items went to and b) it would prevent us from having more work to do after she was gone (in truth, there might have been a hint of her needing to control the process (said lovingly of course!)). I’m honestly not sure if it’s a dragonfly or a butterfly (and I am sure someone will clue me in) but for today we’ll go “butterfly.”

I believe that Mary Nell, too, gave away treasures long before she left the earth. For me it was different than tangible items like this pin. It was the treasure of a home full of laughter, togetherness, generosity, sharing of meals, faith, and a spirit of looking adversity in the eye and saying “I will handle this.” It was a place to savor happiness and work through sadness. She planted seeds of love that took root and flourished far outside the walls of that house.

I am grateful to have been so welcomed in Mary Nell’s home, to have had the love and friendship of her mother-in-law, Lottie Lee, as well as Doyle, Jimmy, Duane, Rhonda, and the extended family. I am a better person, filled with perennial memories, for having been welcomed into this family.

I was telling my coach, Kristie, about Mary Nell last night and I happened to write, “if you see any butterflies they may be Mary Nell’s spirit.” She immediately wrote back: “Funny you should mention. We had a bunch in the front yard today. One landed on Ty’s [her son] nose. Would have given anything for a camera.”

I told Kristie that some moments in our lives (despite the ubiquitousness of cameras, selfies, and our tendency to share) are better spent not fumbling for a camera and being 110% present.

I don’t need pictures to remember the feeling I had being in Mary Nell’s home. I have the memories. Those memories are more than enough.

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