In this blog she talked about how much work she had completed toward her Master of Arts in Humanities degree, as well as the equal amount she had left to finish in order to graduate from Central Michigan University.

On May 4, 2013, her dream of a master’s degree became an educated reality.

So was the amount of work, sleepless nights and MS-related pain and challenges all worth it?

What does her smile tell you?

Central Michigan University Commencement 2013

I hope I make them proud with this post as I let the humbling work of others speak volumes.

See for yourself why Jennifer and I gratefully offer huge thanks to:

• Adam Miedema – our friend and my Central Michigan University colleague – for his vision to produce this video as a way to share our love story with others

• Cynthia Drake – another one of our friends and another one of my CMU colleagues – for her vision to include it with her story about Multiple Sclerosis in the latest issue of Centralight (CMU’s alumni magazine)

• You – who regularly visit our blog – and all of our friends and family who help us to reach our goals and move beyond the disease that brought us together

Onward, with love.

The Fancher Elementary School student was focused more on the activities and issues that typically concern 11-year-old boys. You know, things like making art, drawing pictures, playing baseball and hockey and rehearsing for the 6th grade Mock Rock event.

But his not-so-typical business venture – it’s a story that’s in line with many of the entrepreneurial endeavors featured on ABC’s Shark Tank – quickly introduced Ryan to MS and is leading him to donate a share of his targeted profits to the National Multiple Sclerosis Society.

Here is Ryan’s story and how through his business, “Backus Bracelets,” you can support the NMSS and help increase MS awareness throughout the year.

Behind Backus Bracelets
I first noticed a bracelet on my coworker Adam’s wrist. The bracelet was solid black. About a half-inch wide. It looked woven; almost braided.

“That’s kind of a cool bracelet. Where’d you get it?” I asked. Adam explained that our coworker Kathy’s son made it for him.

Ryan Backus makes his bracelets in any color his customers choose.

The wheels immediately started turning in my head. I wondered if the bracelet was something Kathy’s son could make for Jennifer and me in orange, the color of MS. Turns out orange is her son Ryan’s favorite color, and he couldn’t be more excited to make Jennifer and me our own orange paracord bracelets.

That’s his business.

I followed up with Ryan, and he says he first saw what are described as “survival bracelets” in a sporting goods store. He soon attended a festival where he saw a woman making the bracelets by hand and selling them.

“I thought, ‘I bet I could make these,’” Ryan says. “I knew they were pretty popular and lots of people liked them.”

Following up on his idea, Ryan investigated and learned how to make them.

“I decided to start selling them because I made one for myself – an orange one, my favorite color – and wore it to school and my friends thought it was so cool and wanted one,” he says.

So began Backus Bracelets. He posted a photo of the first ones he made on a local Facebook selling site.

“They were a huge hit right away,” Ryan says. “I got an order for 30 bracelets for a swim team in the second week.”

Backus Bracelets focuses on producing custom orders, fulfilling people’s requests for their favorite colors and color combinations. And so, he orders his supplies, sits down, and starts creating. He says he’s getting faster at making them. It takes him between five and 10 minutes each.

“I like making the bracelets because they are becoming more popular, and people are interested and excited about them,” says Ryan, who is considering selling his merchandise at sporting events.

Orange equals awareness
When I requested a pair of orange bracelets for MS awareness, the wheels immediately started turning in his head. Talking with his parents, Kathy and Bob, he soon wondered if the orange bracelets also could help to fight this chronic disease of the central nervous system.

This bracelet has sparked many conversations about MS.

“I didn’t really know what to make of it at first, but I was happy when I learned more about it and found out I could help the cause,” says Ryan, who turned 12 on March 20 and is the youngest of Kathy and Bob’s four children. “It makes me feel good to help MS, and I am excited to be able to help find a cure.”

Backus Bracelets offers an exclusive orange bracelet collection that is available in honor of MS, with 20 percent of the cost of each bracelet being donated to the National Multiple Sclerosis Society.

Jennifer and I encourage you to order your orange MS bracelet from Backus Bracelets today. They are $5 each, and you can place your order by emailing backus@chartermi.net.

We first started wearing our bracelets during MS Awareness Month and received several comments and questions about them. What’s incredible is I received a couple questions about them this first week of April. What an easy way to keep MS awareness going year-round!

Plus, when people ask questions about it now, the timing is right to tell people about upcoming Walk MS and Bike MS events and encourage them to donate or register to participate.

Then, pause for a moment and think about the fact that your conversation was sparked because an 11-year-old followed up on an idea that he could make a bracelet.

As part of this celebration Jennifer and I spent all day Thursday at Central Montcalm High School in Stanton, Mich., sharing our stories with six different classes of students.

High school English teacher and our friend, Theresa, had invited us to speak as guest authors after most of her students were assigned to read “Let me tell you about … Becoming the Bat Man” – an essay from our book, “Despite MS, to Spite MS,” – as part of their nonfiction writing classes.

What an amazing opportunity to introduce and further inform the younger generation about this chronic disease of the central nervous system. We spoke to more than 120 students about our experiences with MS while also emphasizing to them the importance and value of writing regularly.

The students encouraged us through the number of them who already had some understanding of Multiple Sclerosis, and we left with a greater appreciation for the amount of work teachers do each day.

Then came Friday.Northern Michigan’s News Leader

TV 9&10 – the CBS affiliate in Cadillac, Mich. – featured us in one of the top stories of its 6 p.m. newscast. Reporter Eric Lloyd and photojournalist Jacob Johnson spent some time with us early that afternoon learning more about MS and how we work together to move forward in spite of it.

They did an incredible job in accurately sharing our story and helping to increase MS awareness with their viewers.

Such a story also ties in well with the CBS network. According to the National MS Society website the CBS Cares project “… launched February 21st unites the number one daytime drama, THE YOUNG AND THE RESTLESS, THE TALK’s Sharon Osbourne and her son, television personality and producer Jack Osbourne, to promote multiple sclerosis awareness …”

Our story is just one of the countless others that are out there to increase awareness. And though MS Awareness Week 2013 is coming to a close, we still have nearly half of March and MS Awareness Month to go! Take advantage of this time to stay active in sharing information and your experiences with others to keep the conversations going through the end of March and beyond.

But in reality, aren’t those of us living with MS aware of it 365 days each year?

Let’s make each one of them count!

Or, better yet, step into our Springsteen room.

Either way, you’ll immerse yourself in a sea of orange. It’s a strong citrus sort of color that screams, “LOOK AT ME!” but it’s lack of neon flare whispers, “i promise i won’t bite.”

My consistent color palate at work and at home is obnoxious to some; applauded by others.

Many are perplexed by this vibrant autumn hue that I – a relatively reserved and mild-mannered man – purposely selected for the two rooms in which I spend a great deal of my waking hours.

Orange is the color for Multiple Sclerosis, and there is a push for everything orange as the nation celebrates March 11-17 as National MS Awareness Week.

So this morning as I got ready for work, I donned a brand new bright orange tie to accent my sky blue shirt. And I took into my Central Michigan University office two trays of orange bread – one for people upstairs and one for people downstairs – to encourage others to celebrate this annual observance with Jennifer and me.

To the casual observer, my office and Springsteen room are orange because it’s the color of MS, right?

Uh … kind of.

You see, orange also is the color for my beloved alma mater, Wartburg College. In fact, “Be Orange” the big marketing campaign behind the college that is named after the Wartburg Castle in Eisenach, Germany. This is where, according to wartburg.edu, “Martin Luther found refuge during the Reformation and translated the New Testament into the language of the people.”

So, my office and Springteen room are painted this secondary shade because I wanted to “Be Orange,” right?

Mmmmm … perhaps.

Truth be told, I chose the orange before it ever was the official MS color, and even longer before the Wartburg marketing gurus defined it as a college-level state of existence. Orange was, and is, the perfect match for all my Springsteen artwork.

But hang on! Here’s where it all started to make perfect sense to me, and I saw a total correlation between MS, Wartburg College and being orange:

This morning as wrote a letter to my colleagues letting them know about MS Awareness Week and the orange bread, I honestly was going to sign the message, “Be Orange.” I paused, because I can’t say that. It’s SO Wartburg. Or could I?

Curious, I went to the Wartburg website, and this is what it says:

“What does it mean to ‘be orange’ at Wartburg? ‘Be Orange’ isn’t just a slogan. It’s an attitude, a mantra – a way of life. It’s the…

• energy that comes from being independent and making your own unique choices.

• warmth in the genuine smiles you see around campus.

• inner glow you feel when you get involved in service to others.

• spark of intellectual curiosity that ignites when you find your true calling.

• fire that drives you to pursue your own passions.

Wartburg students want to stand out and put their gifts to good use, and they want to support others doing the same. They are involved, busy and multi-talented. Wartburg students know how to balance school, activities and social life. They work hard, have fun, manage their time …”

As a 1995 Wartburg College alumnus, “Be Orange” indeed is SO Wartburg. But as a person diagnosed with MS in 2000, “Be Orange,” also is SO my MS.

Think about it. Reread the definition above from the perspective of a person living and rising above MS. Finding strength to move forward. Helping yourself. Encouraging people dealing with the same disease as you. Volunteering with others to reach collective goals. Being your own best advocate.

So yes, whatever way you slice it, my office and Springsteen room are orange because of my Multiple Sclerosis, Wartburg College and memorabilia of The Boss.

And maybe it’s not so much that I look to “Be Orange” as it is that I strive to “Be Bold” in dealing with this disease. Yes, orange is quite bold, agree?

How are you being bold in your life with MS?

Jennifer knows this. She just smiles and lets me gripe.

Usually she chimes in to acknowledge she understands why I’m cursing the current stupid running back, wide receiver or kick returner.

“Straight ahead!” Jennifer repeats as though she’s my pigskin parrot. “Stick your head down and go forward!”

I don’t know if she does this because she agrees with me or because she wants me to feel I’m not alone.

This drives me crazy: Athletes on college scholarships or professional payrolls who don’t know any better than to stop. Stutter step. One way … and back. Again. Faking nobody out. Giving every defender ample time to close in and tackle him for a two- to three-yard loss.

Only a few of the truly gifted athletes – such as Walter Payton and Barry Sanders – had the grace and skills to consistently pull off this misdirection kind of juking around on the gridiron.

Bo Jackson is the player who epitomized the running style I wish other players would emulate. Using his size and momentum to overpower his defenders. Straight forward. Never stopping.

From writing about my record streak to being a champion every day, I’ve always treated living with Multiple Sclerosis as though it’s a competition: Me vs. MS.

So why should I respond to my competition with MS any differently than what I expect of the football players I figuratively coach from my couch?

There are so many challenges that I, and so many others, face in living with MS:

• Handling numbness in the hands and feet
• Controlling excessive fatigue
• Dealing with countless other public and private issues

With each day I could ignore any or all of these. Act like they’re not there. Try and fake them out. In the end all it would do is give MS ample time to sneak up and sack me for a loss in my quality of life.

I’m a firm believer in the adage that “the best offense is a good defense.”

And so, I do my homework; research available treatment options; manage and administer my prescriptions; keep a positive – yet realistic – attitude; serve as my own best advocate.

I develop a daily game plan. For example, I know my hands are better for typing in the morning, so I do the bulk of my writing assignments at work before noon. Whenever possible I save my phone calls, editing, proofreading and scheduling until the afternoon.

But like any great coach, part of my game plan includes staying flexible to make “halftime” adjustments if MS brings an unexpected scheme to the playing field.

Just like there are quarters in football, innings in baseball, periods in hockey and halves in basketball games, there will be days when MS gets the best of me. But I know those only are for specified moments in time. My goal is to be ahead at the end of the game.

And I can’t do this trying to avoid the realities of living with MS. I move forward, thinking the same thing that I scream at the football players each game: “Straight ahead! Stick your head down and go!”

Never stopping.

The effects of these challenges  – including everything from her inability to walk to my constantly numb hands and feet – merely are par for our courses of this disease.

It’s as though we are looking right at MS and asking, “Mind if we play through?” But we never stop to see if it’s granting us permission. We just tee it up and drive ourselves down the next fairway of our life together.

Sure, there are plenty of sand traps, trees, doglegs, divots, hazards, hooks and every other thing you can imagine to obstruct our play. Sometimes they do. And so we allow ourselves the needed time – you know, the occasional mulligan or drop – to regroup and get back into the swing of things.

Fore!

I relish the fact that most weekend nights, we pull into our eerily dark neighborhood. More often than not, our porch light is the only light on in the entire subdivision. It’s late. Everyone’s sleeping, except for us.

Like just this past weekend when we drove in close to midnight after dancing it up at WCMU’s annual Night of Louisiana on the Central Michigan University campus. As always, it was an incredibly fun evening of live zydeco and Cajun music.

And it’s at these moments I think about the realities of our life together: Jennifer and I both have MS and combined have taken on this disease for more than 25 years. Together we demonstrate the extremes of how MS impacts people so differently.

With this, our mission is do as much as we can through our writing – including this blog and our book, “Despite MS, to Spite MS” – speaking and living life to the fullest to increase MS awareness and help other people.

We are so proud and excited that the Upper Midwest Chapter of the National Multiple Sclerosis Society has invited us to present at its annual Little Black Dress for MS Brunch on Saturday, March 2, in Coralville, Iowa.

According to the Upper Midwest Chapter, “Little Black Dress for MS events are an opportunity for women (and men) to come together and support the 400,000 Americans who live with MS. … Come together to honor and recognize all people who stand strong in the face of MS.”

It is an incredible honor to serve as the featured speakers for this major NMSS event. We are hoping to see some of our friends and family members when we share our stories of living with and overcoming the challenges of life with a chronic condition, both as a person with MS and as a loving caregiver for a spouse living with the same disease.

To learn more about this event (and see what they’re saying about us!) and to register by Feb. 6, visit here.

And a special feature to note: This event is taking place at Brown Deer Golf Club. Tee time is 10 a.m.!

Oh sure, my hands burn with numbness, and I’m sure Jennifer has her own issues. Going to bed at 11 p.m. and getting up at 3:30 in the morning will have a negative impact on even the healthiest of people.

Roll on!

But don’t tell us that we both have Multiple Sclerosis and should take it easy; that our bodies need a lot of rest.

I’m incredibly busy at work coordinating communication plans for some big projects, such as Retired Army General Colin Powell speaking on Central Michigan University’s campus Jan. 24, and writing magazine feature stories on CMU alumni Cari Cucksey (star of HGTV’s Cash & Cari) and Andrew Dost (keyboardist for the indie rock super group fun., which is nominated for six Grammy Awards).

And Jennifer’s busting it up with the last semester of classes for her graduate program. It’s a 600-level history class that, as I understand it with what she’s telling me, essentially is the history of history. It’s starting way back before the ancient Romans and I heard her say something about having to read a book about Joan of Arc. Her class consists of a three-hour class once each week, with major readings and review papers written between each weekly session. She’ll graduate this May.

But don’t tell us that we both have Multiple Sclerosis and should take it easy. We’re too busy.

Granted, as soon as she’s out of class tonight we’re going home and heading straight to bed. We, like the most experienced alcohol drinkers, know our limits. Let’s face it: Jennifer and I have had this disease for a while. 15 and 13 years, respectively. Long enough to know what we can get away with without doing any more damage than what the disease already has done.

Jennifer often comments, with a Cheshire smirk on her face as she nods down to her power wheelchair, “This is how we roll.”

Indeed.

May we, and the other 2.1 million people worldwide living with this stupid disease, continue to roll on to the best of our abilities.

I went to Central Michigan University’s indoor track today and ran. For a couple laps. I ran three. Walked three. Ran four. Walked three. Ran four. Walked two. Nineteen laps total.

Nine times around the track equals one mile. But, until today, I never used to count the laps. I always had counted the minutes … and the miles.

Last year in January I was showing up at the track – it’s where I usually run throughout the cold and icy winter months – and putting in a hard run for 40 solid minutes at least three times each week. I kept a modest pace that translated to about four and a half miles per run.

And I knew my distance by the time on the clock, not the times around the track.

I was a runner then. Not a great one, but a runner nonetheless. A runner who used to think it wasn’t worth my time to go outside and run if I only had time to put in three miles.

Now today, I am a former runner who considers it well worth my precious time to go to the indoor track to put in three laps.

My, how things change.

I don’t think that within a year’s time my Multiple Sclerosis has progressed. In fact, recent MRI scans and my neurologist’s assessment both indicate my disease is stable. No new lesions on my brain or spinal cord. Medically speaking, everything’s in check. But such scans, tests and assessments can’t see what I see.

MS had shaken my confidence.

If you recall in my post last summer, MS be damned, I had a scary fall when I was out for a run. And in that essay I had on my brave face and was planning that I was going to run a 5K race in under 30 minutes before I turned 40. Turns out that was out when I stopped running.

I was scared I’d fall again. I stopped running. Got out of shape. Lost focus. Gained weight. Found excuses. Forgot about what had motivated me to run in the first place.

I always knew I should get back into running, but I needed that “something” that would motivate me and, most importantly, rediscover my faith in God and myself. I found that key in a previous essay I had written for my first graduate English class:

“And it’s about now that I always think to myself that there probably are healthy, able-bodied people out there who would kill themselves if they felt as good as I do, while there are others out there living with more progressive forms of MS who would kill others to feel as bad as I do. These are among the groups of people who push me to run my regular route at least three times each week.”

I’m starting to run again. I walk a little. I run a little. Working to get myself back to where I once was before MS shook my confidence. And of course, as I comfortably finished my first lap running in more than four months, I had the lines of a Springsteen song (“Living Proof”) come to my mind:

You shot through my anger and rage
To show me my prison was just an open cage
There were no keys no guards
Just one frightened man and some old shadows for bars …
Looking for a little bit of God’s mercy
I found living proof

It was me, not the MS, standing in my way of running. It was in my head, figuratively. The power is mine. I’m the one who has the ability to overcome its mental stranglehold on me, counting it all one lap at a time.

Then there are others who have the drive to say, “This isn’t the drink that I ordered,” and send the proverbial glass back for a new one.

Which person are you?

I’ve always considered myself an optimist who finds the best in the worst. Glass half full, right?

The other day I poured myself a bowl of cereal and when I went to the refrigerator, I quickly discovered the milk had expired the day before that other day. Rather than thinking this unfortunate turn of events damned the next 15 hours of my life – “This is going to be a terrible day!” – I was grateful that:

• I had cereal to eat in the first place

AND

• Instead of Wheaties, I had poured Frosted Mini-Wheats, which I easily could dump into a sandwich bag and conveniently eat dry on the way into the office.

How cool is that? Two goods from one bad! Glass half full? My cup overfloweth!

Optimism when facing harsh realities

So what happens when we’re not talking about something as simple as breakfast cereal and instead are dealing with harsher realities such as living with a major medical condition or are serving as the caregiver for a spouse or family member living with a chronic disease?

With Jennifer and me both having Multiple Sclerosis, is my glass always half full? Not always.

Even my keen sense of optimism is stymied when the wave of MS fatigue totally wipes me out at the end of some days. These are the days when the simple tasks of taking my self-injected shot of disease-modifying medicine and brushing my teeth before bed may as well be as monumental as performing acupuncture with enough needles to coat 10 porcupines and washing a 747 jet by hand with a bucket of soapy water and a sponge.

It’s even worse is when I can do nothing but watch my wife as she cradles her face and wince in indescribable pain following a zing of deep nerve pain triggered by her MS-induced trigeminal neuralgia. Or when she asks through tears what she did to deserve losing her ability to walk.

Yeah, I wish Jennifer and I both could send our glasses of MS back for new ones.

But I wonder if it’s at these moments that we are forced to look up to the heavens and ask God why the hell this stuff is happening to us. Indeed, what did any of us do to deserve the hands we’ve been dealt?

And, in looking up, is it then that we start to see the silver linings in the clouds?

I soon discover – even in the storm clouds – the silver linings that keep me going. I see beyond the fatigue and pain, and start to count my blessings that I have a great job to tire me out and a beautiful wife and marriage to relish for better and worse, in health and sickness.

In looking to God and up to the clouds for the silver linings, no longer are we focused on the limited half full and half empty glasses. We see then that our lives are part of something greater beyond what’s right in front of us.

Is your glass half empty or half full? How do you find the silver?