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.

Delaney & Taylor, Who says 13 year olds don't get it?

First of all I won't pretend I'm Denise writing this blog. If you notice any problems with punctuation, sentence structure, or grammar please send all complaints to Mrs. Kennedy, my high school English  teacher. Remember when we used to just call it English, not Patterns of Communication or Literacy Works? How things have changed, but I digress...   About a week before Thanksgiving I was approached by two past students of mine at Meadow Glens. Delaney and Taylor were my students from kindergarten to fifth grade. They are now seventh graders at Madison Junior High. I absolutely loved having them in class back in the day. As it turns out they had both taken an interest in running. Isn't that interesting? Maybe I'm rubbing off on people.     Anyway, they saw a newspaper article on Facebook about what Denise and I were going through and sprang into action. It seems that they had a service project coming up in Social Studies class and instead of volunteering at a homeless shelter or something else they wanted to do something "for someone who mattered to them." That's where I come in. I cannot tell you how humbling that simple statement was to me. I get all choked up whenever I think about it.  In the article it said I was going to push Denise in a full marathon in New Jersey on the first Sunday  in May, and along with that I was trying to raise $26,200 (a marathon is 26.2 miles) for the Les Turner ALS foundation.  That's where the strange number came from. Basically a thousand dollars a mile. Pretty aggressive goal but reachable, thanks to Delaney and Taylor.    So the girls decided to put on a dodgeball tournament to help me with my fundraising goal. Their goal was $5,000 which I thought was awesome. How cool would it be if they could reach their goal while helping me reach mine. So on the week Thanksgiving, Dodgin' 4 Lou Gehrig's Disease was born. These girls were on to something, something big.   The way in which these girls went about this event would probably impress a 20 year veteran of fundraising. They sold oodles of Dodgin' 4 Lou Gehrig's Disease bracelets for $2 a piece, got M&M Orthopaedics to spring for all the T-shirts for volunteers and players, and instead of 15 to 16 teams they ended up with 22! They also created a Facebook page that has over 200 friends, rounded up 30 volunteers to help with the day's events, and the back of the event day program listed over 70 families and businesses who helped sponsor this event.  These girls are wise beyond their years; I'm sure they learned a lot along the way. For a first time event everything ran smoothly and a good time was had by all. Denise and I stayed for the whole event and were so impressed by the "community feel" through out the Field House.     The success of this event was so beautiful. I can't fathom the amount of work that had to go into an event of this magnitude. The girls raised over $13,000 for the Les Turner ALS foundation. Almost three times their original goal. To watch them during the event was a blessing. They thoroughly enjoyed all aspects of the event from planning to participating. I was so glad they could enjoy the day and see it all happen in front of their eyes. So many times In life you have all the hoopla leading up to an event and then "BAM!" it's gone and you don't remember a thing. These girls will remember this event always, a great life lesson.     Finally, what more can I say about Delaney and Taylor? I feel as if I had a front row seat to an actually blessing from God with the help of these girls. They single handedly changed my perception of today's youth. They are focused and want to be part of change. They want ALS to be cured. They believe they can help make it happen. They are making Dodgin' 4 Lou Gehrig's Disease a yearly event with an even bigger goal in mind. These girls "get it." I am so humbled to have been a beneficiary of their kindness and grace. What a blessing these two teenagers are.     Only thing left to do, run a marathon pushing my wife, Denise. It's not going to be easy pushing "Porky" but when I'm struggling towards the end nothing will stop me from reaching my goal. All I need to do is remember back to  January 13, 2012 and that above all will get me across the finish.  P.S. Please take a minute to check out the links to the right under Home to read more about the marathon and the tournament.

The Dry Run...

While I realize many of you may be thinking its time to move on to another topic and put the potty issues behind us... believe me when I tell you, I share your sentiments,and would have liked to report that the dilemma was resolved but that has not been the case.  So hang in there, and try to summon the courage to continue reading. You may find yourself wanting to look away but feeling compelled to peek the way you do when passing a car wreck...

The private garments arrived via the Internet and so the day came when I ventured out, fully outfitted for the Dry Run! I'd like to point out that this was an attempt to gauge comfort and feasibility, with the expectation to be somewhat uneventful and to quite literally experience a dry run, pun intended!  

I had no such luck, and learned quickly that I could not depend on Depends to fIt my bottom snugly enough to hold the inevitable deluge...proving my theory that they could not possibly work for a everyone between 115-190 lbs. Not having planned for the possibility of a wet run, at the age of 49, I had my first ever Commando experience...you can stop laughing now!

Desperate for a solution, I finally called to schedule "The Big Fancy Test" I had been avoiding. The directions for test preparation included arriving with a full bladder. Really? You must be joking! If a had the ability to arrive with a full bladder and not lose control, I would not need the test! I opted for sipping some water on the ride there, in hopes that some would make it to my bladder before the test began, this appeared to suffice.

The technition who performed the test was very pleasant and explained the procedure in detail before she began inserting tiny long tubes with electronic sensors in very private places. Once again humbled by the embarrassment of my business exposed, and with the added pleasure of being wired to measure fluid levels and contractions, I decided this was the equivalent of having Chris in the delivery room, had we shared the experience of the birth of a child. This was a new level of intimacy that would certainly enhance our marriage...good grief!

Although, I still maintain the opinion that a non-invasive catheter is an oxymoron, when it was all over and done with, I'd have to admit it was not that bad. I'd been through worse, and I had minimal discomfort following the procedure. 

Two weeks later, we met with the doctor, our own Christina Yang, and learned that my overactive bladder was contracting intensely when it was filled far below capacity but it was otherwise functioning normally. Since the medication I was taking was not helping, there were two others I could try before resorting to more radical approaches to resolving the problem. 

She went on to describe a procedure where they use a pacemaker to regulate the nerve impulses that cause the contractions, and although that sounded interesting, I was still hoping one of the two medications we had yet to try would do the trick. In the meantime the nurse suggested we try the XL size kids pull ups, as I would likely fit into the size range and prevent leakage in the event of another incident.

Another two weeks have passed since I started the new medication and I am happy to report that it appears to be working. Unfortunately, there were some side effects I should have paid more attention to that resulted in an unscheduled visit to the ER last week, but with extra fluids and a extra large bowl of Raisin Bran every day, I hope to avoid a sequel to that unpleasant trauma...

While the pull ups with the cute butterflies, hearts, and peace signs are much easier to laugh about, I'm ready to give them up now... So let's hope this is the last you'll hear of my dysfunctional plumbing; I think we're ready for some new material...

Always Looking Sexy...

When we got home from the last plumbing appointment, I read through the paperwork describing the two tests that would be potential next steps, and decided the prescription was going to have to work! 

I began taking the medication and tried to convince myself it was working, but three weeks later, I was still unsure that anything had changed. I took some time to research the medication online, and read that you could take as much as 10mg daily and I was only at 5mg. So, I decided to call and ask if we could increase the dosage, hoping that would work. I was given the green light and informed that sometimes the medication took time to work and to give it a few weeks.

Wanting desperately to avoid the tests, I increased the dosage and willed myself to believe it was making a difference... but in the end, in the battle of mind over matter,  my will could not prevail, and embarrassing events began to occur more often than I'd like to admit. 

It had gotten to the point that I had to seriously limit my fluid intake, especially if I dared to push my luck and leave the house, but it really wasn't the best solution as the lack of fluids in general made me feel worse. 

While at the clinic for a study visit, a sample was requested, and since I was unable to comply,  I had to admit to my less than brilliant strategy of fluid limitation.  I was warned of the harmful effects of dehydration, and encouraged to utilize protective products to deal with the situation. After all these high tech garments were invented for the astronauts, there's no reason why I should be embarrassed about using them!

Oh sure... Use the high tech argument with the geek! Just because I like computers, and software doesn't mean I'd be eager to wear Depends!  However, I had to humbly admit, I needed to try some kind of a protective garment, at the very least when out of the house for extended periods of time. 

Okay, so the way I figured it, the most discreet way to handle this would be shopping for them on the Internet, and Amazon.com seemed to carry everything I've needed so far, and the search commenced. 

I wasn't prepared for the expansive selection, and the attempts at persuasive marketing to lure potential buyers. Although I needed them, it was apparent to me that I was not their target customer when I felt no excitement after reading "Now in new soft peach!"

The product features were interesting: 
Size: small/medium fits 115 - 190 lbs -This was of concern to me; how is it possible that one garment could properly fit individuals that range 75 lbs in body weight?  

Two ways to change: step-in & pull-up OR easy change with 4 secure Velcro® closures, sounded too much like the description on diapers for toddlers. 

Maximum absorbency, captures and locks in odor, okay, sounds useful...

Quiet and comfortable, you mean to tell me these make noise when you wear them? That ought to be hilarious!

Made in the USA from domestic and imported materials... Seriously?

And Unisex? It's been a while since I had to purchase diapers for my daughter, but I do remember them being gender specific, why would that change for adults?

At any rate... I had to make a choice and none of the options were going to come close to matching my favorite French lace bras, so I had to find some way to have fun when it came time for a dry run with my new undergarments.   And well... wearing my matching panties over the soft peach granny pants doesn't mean I've lost my mind, it's just an example of my resilient sense of humor!

Sorry Honey... ALS does not stand for Always Looking Sexy!