Smiling through the pain...

It was a brisk, sun filled morning on the Jersey shore. We were fortunate to have intimate knowledge of the back roads in the local towns, and made it to the start in record time. We advanced through the parking lot to the entrance of Monmouth Park, as if we had backstage passes to a rock concert. Shortly after we arrived, we spotted Eric, with his distinct mohawk hair cut, new to the team this year, he added his own flash of excitement. This was going to be fun!

Huddled in the van to stay warm, waiting for the rest of our teammates to get through the long line of vehicles pouring into the lot, you could feel the nervous energy. Chris called out to Nancy and Dani, two of our half marathoners, racing to the starting line as it was beginning. We exchanged quick hugs, and they were off!

Soon after, Laura, Meredith, and Kyle came trotting over, and it was time to open the door, and roll down the ramp. The controls had recently been changed on my power wheelchair, and admittedly, I was still trying to get the hang of it. Chris eased me down carefully, and in a snap they transferred me from the chair into the jogger. Harnessed in, we headed for the last corral at the start. We were not looking to set any records that day; it was about the journey, not the finish time.

This was the third year we were returning to the New Jersey Marathon. Although Chris ran it in 2011, he ran it alone, while my sister Angie, and cousin MJ, pushed me in a wheelchair to catch a glimpse of him at as many check points as possible. It was a sight to behold, two middle aged women pushing a third, as fast as possible, uphill then downhill, laughing hysterically! I cannot imagine what the people we passed were thinking, but we had a blast cheering Chris on at every opportunity. Having been diagnosed five months earlier Amyotrophic Lateral Sclerosis (ALS), I could still walk short distances, but my running days were over.

In 2012, Chris ran while pushing me in the jogger, Meredith and Kyle joined us for the full marathon, while a group of nine other friends and family members ran the half. Kyle, also taught Physical Education, like my husband Chris, and Meredith, a former third grade student of his, was all grown up and teaching too. I love to tease him about it, because it makes Chris feel old. They had plenty to talk about during the race, and well... I was as snug as a bug in a rug, and managed to fall asleep for a bit after mile ten. Something Chris will never let me forget!

This year, 2013, was very different, Super Storm Sandy had ravaged the coastline at the end of 2012, and my disease had progressed leaving it's crippling affect on my body. Neither of us would ever be the same physically, but our spirits were not broken!

We started out slowly, at the back of the crowd of runners lining the start. A place, I'm certain, my veteran, marathon husband, has never before seen, and I promised myself, to stay awake the entire 26.2 miles. It was the first chance I had to see the shore since the storm, and I didn't want to miss a mile. As we traversed the course, vivid images of my childhood ran through my mind, followed by my first car, first apartment, and many memories of my adult life. I found myself once again, questioning why I had ever left.

I enjoyed listening to the banter flying back and forth between the runners. Meredith and Kyle were weeks away from their wedding, Laura was running her first full marathon, and Eric had a witty sense of humor. Given that they were all good friends, there was plenty of material with which to do a stand up routine as they razzed each other, and kept me entertained through the whole event.

Having been awake for every mile this year, I learned that marathon runners go through phases as the miles tick away. They start out pumped up, filled with adrenaline, calling out the mile markers as they approach. "That's three!", "That's six!", "That's ten...", "Looking good!", they cheered, while passing Shot Blocks and Goo for energy, and stopping briefly for port-a-pottys, Gatorade, water, or to thank a random citizen with a shout-out as we passed.

Another big difference this year was that Chris allowed the team to participate in the hardest part of the race, pushing me! I know that was a tough decision for him, but I'm glad he relented; I think it gave each runner a deeper sense of sharing the experience, than running along side us could provide.

By mile eighteen, I think it's safe to say we were all hitting the wall. This was close to the course turn around point, and it could not come soon enough, as all of us had reached some level of physical discomfort. This is when, for a brief stretch, we jokingly verbalized our discontent. We hated the sun, we hated the wind charging toward us, we even hated Eric, who pushed us faster, keeping up the pace!

Luckily, this is also nearing the point in the course where we turn toward the ocean on the last leg of the journey. The grandeur and vast majesty of that view, at least for me, seemed to quell the pain to a tolerable level.

The runners say, a marathon is really two races, a twenty miler and a 10k, and I can see why. At mile twenty, the game changes, and it really becomes a mental challenge; the only way through it, is to break it down, into bite size pieces.

The 10k melts into a 5k, and eventually all that stands between you and the finish line, is the final two tenths of a mile. Although I was not running, it seemed that every muscle in my body ached from the inability to move, as badly as it did when I could run, and on some level, I shared the pain of my teammates.

At mile twenty-six, all of them yelled out, "Let's bring this home!", and we lined up across the promenade from side to side, as we crossed the finish line together! This year I intended to earn my medal, and by the end of the race, I felt that I had!

I dedicate this blog to my husband Chris, our friends: Meredith, Kyle, Laura and Eric, Nancy, Dani, and Frank, who signed up and smiled through the pain, to help those of us who struggle with ALS every day!

We thank you for your friendship, commitment and generous support; we could not do this without you!

Thank you my friend Loni, it was an honor to have you and Nathan at the finish line to place my medal around my neck.

Special thanks to Joe Gigas, the Executive Race Director of the New Jersey Marathon, who welcomed us back another year, our friends and family members who's behind the scenes help made this trip possible, and Rob Spahr of the Star-Ledger for picking up our story during ALS awareness month!

Dear Friends and Family

As many of you know, I have been living with ALS, Lou Gehrig's disease since my symptoms began in early 2010. It's now been three years since this all began, and I have learned a lot about myself, and the incredible people who have been right beside me.

When it began my fingers were twitching and losing strength, and you helped me open my water bottles. When my right leg started to drag, you laughed with me, and told me it was time to give up wearing heels. When I fell and broke my wrist, you started driving me to work, bought me a cane, and eventually a scooter to get around safely. When my speech began to slur, and it strained me to talk, you spoke for me. When I received my diagnosis, you held me in your arms and cried with me.

When I could not come to work, you visited me, and when I could not climb down the stairs of my home you helped move me to a handicap accessible home. You walked alongside my husband and I in walkathons, and many of you cheered, walked, and ran with us in my first marathon!

Together, with your help we raised over 50,000 dollars for research and patient care in the last two years! An unbelievable accomplishment, that our patient community recognizes with immeasurable gratitude. I see first hand the benefits of your fund raising efforts right in our local support group, and in the services provided to my family from the Les Turner ALS Foundation.

In a few short weeks we will head back to New Jersey for our second marathon and we are not nearly as close to our goal as last year, yet every month there are more families coming to the support groups for help! Please share our story with your Facebook friends and family members. I'm typing this blog because I am fortunate enough to have technology that allows me to communicate with you even though I have lost my speech and the use of my arms and hands. Help us provide this and other needed equipment and services to others living with ALS!  Click the link above to connect to our website and help or share my blog through Facebook. Please don't let this opportunity pass, someone is diagnosed with this disease every ninety minutes, help us stop it!
Thank you,
dd

It's Been Too Long…

Several months have passed, the mild winter gave way to a warm spring, a searing hot summer, and this morning I snuggled under the covers as crisp autumn air filled the room.  Quite a lot has changed since last winter; I hardly know where to begin...

We landed in a beautiful ranch home, on the perimeter of a small suburban subdivision, adjacent to an expanse of farmland that reminds me of growing up in the Garden State.  Most days I am at peace, as I work within my limitations, and surrender worry to hands far bigger and stronger than mine. All that I need has been provided and then some... much more than I could imagine, and much more than I deserve.  I realize these are all gifts. 

We did not get here on our own, there are countless pairs of hands and feet that carried us. The list of overdue thank you notes is overwhelming. I have not lost my manners, but my hands betray me. I am so grateful for each of you, you know who you are... Don't give up on me!

We attended a "voluntary" wellness screening last weekend, where they take your vital signs, draw blood, and everyone reports on how many servings of fruits and vegetables they eat a day. In my condition, this strikes me as nothing short of humorous. Most of my meals are consumed through a feeding tube, it's been a while since I could honestly describe my exercise routine as cardio, and how do I respond to questions such as, "How ready are you to make changes in your lifestyle to improve your resistance to germs?" … Seriously?

Okay, I'll play along, but do they really think these surveys have value? Are they really collecting useful data? I stand firmly on the position that health nuts find it affirming and the rest of us have a skewed perception of what qualifies as a serving vegetables!

Nonetheless, one question did get me thinking... it went something like this...   Do you belong to a group or organization where you feel you are making a contribution?  Now we're getting somewhere! Isn't that what makes us thrive? Isn't that what makes us get out of bed in the morning when we could otherwise pull the covers over our heads and go back to sleep? Normally a question like this would get my mind dancing, but on that particular morning, sitting in my wheelchair, it was convicting. 

Almost instantly, one of my favorite verses slipped into consciousness  "For everyone to whom much is given, of him shall much be required." -- Luke 12:48 or in The Message translation:  ... Great gifts mean great responsibilities; greater gifts, greater responsibilities. An immense sense of gratitude washed over me, followed in equal measure  by a healthy dose of Catholic guilt, the remains of old programing. Who am I to be so fortunate and while I sit here consuming resources, how am I making a contribution? How can I make good use of the time and capabilities I have left? 

One week has passed since I began writing this post, the process is slow, as I toil daily the typing leads to fatigue, but I press on hoping to find the answer... 

Today I conclude with this challenge… Despite the struggle to speak, weakened muscles and uncooperative hands, vow to bless one person a day, to love them, to demonstrate one random act of kindness, and focus on what I can do, not what I cannot... 

Training Rides...

This week I was finally able to get out into the sunshine and ride along with Chris on his training runs, and I could see right away why our proxy riders, Maddie and Amber, were enjoying the experience. Wow, fresh air, sunshine, and someone to push while I just sit back and savor the thrill of the ride, this is delightful!





First I thought... I'd very selfishly claim the blessing of the mildest winter weather I can recall in my experience in Chicagoland, as Gods favor on our quest...and why not? After all on a beautiful June day in 2010, our beach wedding, got rained out, as a severe thunder storm passed through the area at the exact time it was to commence. Four months later, a very large deer ran into our brand new CRV, nearly totaling it. Did I mention, this happened while we were on our way to church? And...two months later, we got the news that I had ALS!

Through it all my faith and my sense of humor, have stayed remarkably in tact, so I say sunny 40 degree weather in Chicagoland in February is gift intended just for us, and I dare you to argue the point, no matter how crazy or delusional it sounds to you. Stake your own claims...I won't stand in your way.

I was elated that Chris chose to run my old rollerblade route, a three mile loop I would repeatedly race around to the point of exhaustion, at any opportunity during the warmer months. Still...my personal best at seven laps or 21 miles, would be shy of Chris' challenge to push me 26.2 in May.  I've been joking about needing a blindfold for the marathon knowing how fast Chris can run, but I really wouldn't want to miss one moment of the experience.

Chris shares the excitement of his riders, so it seems that he likes to have a chatty passenger, but for me, the relationship with the course was much too intimate to divert my focus with conversation.
You see... it had been two summers since I'd felt the vibrations from the wheels against the pavement, and as they were emanating from the footboard where my feet were tethered, they were pulling me back into the memory. I closed my eyes, focused on the movement of the jogger, and slipped back into my skates to savor the run.

I didn't have to open my eyes to know that we were winding down Saddleridge, or headed downhill on Bridle. I could still feel the burn in my quads as we pushed up Old Forge and Appaloosa, and I giggled when he took the steep winding path by the park at full speed.

This was more than a training run for me; it was a chance to feel a little bit of the joy I used to feel under my feet; it was a wonderful gift, and I can't wait to get back out there.
Thank you Chris...

The Art of Possibilities...

I have always enjoyed learning as an adult, and in particular I enjoy any form of learning related to leadership. I've been fortunate to have had the opportunity to attend business conferences and leadership conferences, to hear many of my favorite authors, motivational speakers, and leaders from a vast array of industries and professions teach. I'm sure my former co-workers are chuckling at the idea that I may have read yet another book that I'm all excited about sharing with them...

In the summer of 2009, I invited my husband Chris to attend one such leadership conference and I was surprised by his response that went something like this "I'm not a leader, I'm a follower.".  Wow! I thought, you get up in front of groups of children all day long and teach, and you don't see yourself as a leader? This boggled my mind, and I still wonder if there are others like him, who feel the same way.

More than a decade ago, I read a book titled The Art of Possibilities written by Rosamund Stone Zander, family therapist, and her husband, Benjamin Zander, conductor of the Boston Philharmonic Orchestra and teacher at the New England Conservatory of Music.  Their diverse experiences gave shape to interesting perspectives on leadership and it remains one of my favorite books to this day.

Benjamin talked about a few ideas that helped to shape my thinking as a leader over the years. One was Giving an A in the Workplace, this idea reminded me that everyone has something to contribute, and my job as a leader was to create an environment in which people were appropriately tasked with responsibilities that allowed them to feel valued for what they had to offer. It also meant I had to give them the benefit of believing that they wanted earn an A, and examine the situation if the individual was not appropriately placed and needed reassignment.

The second was his practice of giving his students an A at the beginning of a class but asking then to define in writing exactly how they were going to earn it. This idea was simple to apply in the business environment by getting people involved in their goal setting, shaping their roles in the organization, asking them what they enjoyed doing, and what they wanted to achieve. This approach increased  ownership and helped to open our minds to tackling more challenging business issues.

The third idea that really resonated with me was Leading from Any Chair. This in short means you don't have to be the Conductor to lead the orchestra, or in the business environment, you don't have to be the CEO, the owner, or even the boss to lead change, something I always felt passionate about. If what you want to do makes sense, no one will stop you from taking it on, and they may even decide to jump in and help you get it done!

How does this apply to my "Adventures in Losing Stability"? When I think about how Taylor and Delaney approached the idea of devoting their community service project to create an event that would help raise awareness and funds, to support research and patient care for those suffering from ALS, I could not help but see these young women as future leaders.

The written outline of their plan detailed each activity, expense, and expected proceeds to reach their goal of $5000, and they thought of everything!  No one told these girls they couldn't do it and they took off with a running start.  They recruited family, friends, parents, teachers and even secured business sponsors to participate; it was truly a successful community event, and they have already started talking about how to make it even better next year!

Near the end of the event, I had the pleasure of meeting the girl's Social Studies teacher and mentor Mr. Bakke, shortly after, another teacher pointed him out and whispered in my ear "That's their teacher, I've heard him speak and he's a really awesome teacher!". I don't doubt that...

I also met the girls' families: Lisa Gibbons and Jennifer Morrissey, siblings, aunts, and grandparents who were all fully engaged in making the event a huge success.

So as I sit here writing this I wonder...does Mr. Bakke think of himself as a leader?
Do these parents see themselves as leaders? And do they see, these two bright young women, as examples of the leaders that will emerge from their generation?

And finally does Chris see himself as a leader, recognizing that this all started because he took the lead, setting a challenging goal to push me for 26.2 miles, and inspired two young women, and a community he served for 23 years, to get behind him in support of reaching it?

From where I'm sitting... I surely do.