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For the second time this year, a sense of longing weakens me as I watch the people running along the streets. I can’t do that. Another calf muscle tear has set me back a step or two; no longer able to run … right now.

Give it time. Recover. Go for a walk instead.

My runner mindset cringes at the thought of going for a walk. Yay. A walk. It’ll take me twice as long to cover half the distance of my regular run. I won’t even work up a sweat, so it’s barely worth the effort or the time I’ll put into it. Such sour grapes. That’s the runner whining.

My anger soon gets a shot of reality when I think of Jennifer and others living with the same disease I have who only wish they could walk a tenth of the distance as me in 10 times the amount of time. And I wonder if they are weakened by a similar sense of longing every time they watch people walking along the streets. They can’t do that. Time and wicked MS exacerbations set them back a step or two; no longer able to walk … right now.

Take the time. Remember. Fake a smile instead.

I only hope I’ll never know what that’s like.

I pray I can recapture my strength and run. Push myself, train and enter a race. Throw my previous personal-best times out the window and set a new mark for me today. See my name and time in the race results; concrete proof that I still can put my best foot forward and stride across the finish line.

I only wish she could know what that’s like.

For us, I walk on with a renewed sense of grateful determination. And with every step I praise and curse this disease for what it’s doing: forcing us to be content with what we still have left, only to feel guilty for selfishly wanting more.

It seems like forever since we’ve written for our blog, but it’s not like we haven’t been writing! We just completed a super-intense six-week summer class for our graduate degree from Central Michigan University. Guess we didn’t anticipate ENG 535 History of Literary Theory would take so much out of us. But thanks to our wonderful professor – Dr. Ron Primeau – and fellow classmates, we really got a lot from this course.

With this, we wanted to share with you the abstracts for our final papers. Interesting thing is that our literary criticism papers, which dealt with literature, art and pop culture, each had incredibly close connections with the disease we both share.

Hope you enjoy these and they both give you some things to think about.

Are We There Yet? Americans with Disabilities’ Role in Literature
by Jennifer Digmann

Christmas dinner with Ebenezer Scrooge. The leader responsible for The New Deal. A mind-bending telepath in charge of a comic book super hero mutant army. A real life Super Man. Two women with waist-high views of the world. What do these things have in common? Believe it or not, they’re all connected through literary theory. They are part of the discourse explored in my paper about how physical disabilities have been handled in literature and different media before and after the Americans with Disabilities Act was signed into law in 1990. This landmark civil rights legislation was crafted to remove literal and figurative obstacles for disabled citizens. The theorists used to address this issue include feminists Adrienne Rich and Annette Kolodny, disability theorists Tobin Siebers and Lennard Davis, and intellectual Michel Foucault. This paper analyzes from various critical approaches—such as reader response, differential, and cultural studies—how physical disabilities are portrayed through Charles Dickens’s character Tiny Tim, President of Franklin Delano Roosevelt, Marvel Comics X-Men character Professor X, actor Christopher Reeve, disabled author Nancy Mairs, and excerpts from my personal blog about living life with a physical disability.

The Boss, in Theory
by Dan Digmann

From national magazines featuring his picture on their covers, a Rock and Roll Hall of Fame Museum exhibit honoring his life’s work, countless arenas selling out his high-energy concerts, and so much more, Bruce Springsteen is a musician, poet, and social activist who gets noticed. Considering Springsteen’s humble beginnings as a struggling artist playing the bar scene on the now rundown New Jersey shore, it isn’t clear what propelled him to his legendary pop culture icon status. This paper—The Boss, in Theory—looks into how a knowledge of critical theory can explain how Bruce Springsteen, after establishing his credibility, has continued to stay socially and culturally relevant since he hit the mainstream with his first album, Greetings From Asbury Park, nearly four decades ago. This is accomplished through applying the critical approaches of theorists such as David Hume, John Fiske, Longinus, Annette Kolodny, and Wolfgang Iser to Springsteen’s music and political actions and how these collectively have affected his passionate fans as well as outspoken nonfans and disinterested observers. This includes a comparison to Shakespeare to explain Springsteen’s lasting impact as well as a reader-response perspective on how Springsteen’s music is helping one longtime fan come to terms with being diagnosed with a progressive chronic illness.

And BTW: We both ended up getting an “A” on our papers

At this time twenty years ago, I was a carefree teenager looking forward to getting my driver’s license. Disability was a word I hardly knew.

Fast forward to the present, I am a graduate student able to access my college library through power-assist doors and an elevator that takes me all the way to the fourth floor. These are just some of the benefits I have through the Americans with Disabilities Act.

It was twenty years ago this past Monday, July 26, that President George H.W. Bush signed the ADA. This legislation has allowed me, and millions of other Americans living with a disability, to enjoy the same livelihood as other able-bodies Americans.

To celebrate this important landmark legislation, we wanted to share with you the op-ed piece that was written by our friend and colleague Susie Rood, director of Student Disability Services at Central Michigan University. Her involvement in advocacy work related to disability services spans more than a decade, and we are empowered by what she has to say.

We hope you are too, and we invite you to share with us what doors the ADA has opened for you and your loved ones.

Americans with Disabilities Act celebrates 20 years
by Susie Rood, CMU Student Disability Services Director

Kentucky’s Republican Senate candidate Rand Paul – the son of Rep. Ron Paul, R-Texas – sparked some unsettling feelings in the disabled community this spring with comments he made in a National Public Radio interview.

NPR’s “All Things Considered” host Robert Siegel asked Paul, in part, if he thought the Americans with Disabilities Act was an “overreach” and “… that business shouldn’t be bothered by people with the basis in law to sue them for redress?”

Paul responded, “Right. I think a lot of things could be handled locally. … I think if you have a two-story office and you hire someone who’s handicapped, it might be reasonable to let him have an office on the first floor rather than the government saying you have to have a $100,000 elevator. …”

Regardless of how a person feels about what Paul said, his comments generated lively political discussions in the months leading up to a milestone in ADA history.

This week marks the 20th anniversary of President George H.W. Bush signing the Americans with Disabilities Act into law and proclaiming, “Let the shameful walls of exclusion finally come tumbling down.”

This historic piece of civil rights legislation was pivotal in providing equal access for individuals with disabilities in areas such as employment, entertainment and housing. Perhaps Paul’s seemingly controversial comments illustrate the extent to which the ADA has become more commonplace over the past two decades, and the commonsense “why wouldn’t you?” attitude is exactly what the ADA was intended to foster.

Before the ADA, accommodating one individual over the convenience of others wasn’t even considered. Now universal design features – such as buildings that are accessible with curb cuts and automatic door openers, soap and paper towel dispensers that don’t require pulling a lever, and open captioning on television sets – are standard.

While not directly intended for able-bodied individuals, we all benefit from these conveniences. After all, how many of us have used a pedestrian ramp to a football stadium or a curb cut at the grocery store and been thankful there weren’t steps?

As with all civil rights legislation, the ultimate goal is for it to not be needed; to have a society in which all individuals are treated with respect and dignity and every person has equal rights and access. Because of this, common occurrences in our daily lives now include seeing signs for wheelchair access, finding assistive listening devices at movie theaters as well as seeing an individual using an assistive animal. Without access to such resources, these individuals would not be able to fully participate in our society.

It is very difficult to legislate civility, which is the underlying goal of all civil rights legislation. Such legislation will no longer be necessary when the founding principles of America and these laws become a part of our accepted everyday lives. While we’re making strides, we unfortunately are not completely there.

My days are numbered. Medical experts essentially tell me this all the time.

I heard it most recently when I attended an MS conference last weekend hosted by the University of Michigan Hospital in Ann Arbor.

In not so many words, they said that most people with Multiple Sclerosis live with the relapsing-remitting form of the disease for so long and eventually transition to the secondary-progressive form after they’ve had the disease for 10 years.

I hate it when I go to these kinds of things because they often provide a subtle yet very in-my-face reminder that I truly have a chronic, progressive disease. I don’t blame them for their pessimistic forecasts because I realize the medical facts don’t lie.

With a decade under my belt, I guess I’m living on borrowed time.

While I don’t consciously think about it, I wonder if I unconsciously realize this with every step I take. Every stair I climb. Every race I run. Every shoe I tie. Every workday I complete. Every book I read. Every sentence I write.

Everything I do.

Such a reality check has the potential to throw me off my game and into a woe-is-me abyss that could consume my life. But I won’t let this happen. Guided by the charge of Coach Jimmy Valvano who said, “Don’t give up. Don’t ever give up.”

With a decade under my belt I know I’m living on, regardless what form of Multiple Sclerosis I have.

I consciously realize this with every challenge I face. Every obstacle I overcome. Every frustration I feel. Every battle I lose. Every battle I win. Every moment I live to its fullest.

Every day, I embrace.

Jennifer and I, along with her care coordinator Rochel Genge, R.N. and others from Region VII Area Agency on Aging, interacted with many elected state officials at the third annual Older Michiganians Day in Lansing on June 10.

Self portrait of Jennifer & me getting political at the Capitol

Jennifer & Rochel after our chance meeting with Rep. Caul

We even have photographic proof that we advocated for the MI Choice Medicaid Waiver Program through impromptu conversations with influential legislators Sen. John Gleason, Sen. Deb Cherry and Sen. Roger Kahn on the lawn in front of Michigan’s State Capitol Building. While we have met Sen. Cherry and Sen. Kahn before (see related post here), this was the first time we met Sen. Gleason.

Jennifer followed up with Sen. Gleason after he spoke to the more than 600 OMD participants to thank him for supporting the Waiver program.

But we forever will get giddy when we think and talk about our chance meeting for which we have no picture. No picture because we never expected to run into our State Rep. Bill Caul in the House Office Building hallway as he was rushing to get to a meeting in the Capitol Building across the street .

Sure, we were on our way up to his office to remind him of MI Choice Waiver Program and how it saves the state millions of dollars and how it is making it possible for Jennifer—one of his constituents—to continue living in her own home and positively contributing to her community. But as we made our way to get in line for the elevator, Rep. Caul made his way around the hallway corner and I whispered to Jennifer, “That’s Bill Caul right there!”

Jennifer made a split-second pause to increase the speed of her power wheelchair and, without saying a word to me, sternly rolled forward and called out, “Excuse me, Representative Caul?”

The noticeably tall representative who has served our district since 2004 stopped, looked down at Jennifer and smiled.

“I don’t know if you remember me, but we’ve been down here before to advocate for the MI Choice Waiver Program that provides the services for me to continue living in my own home …” Rep. Caul was shaking his head and kindly cut Jennifer off.

“Of course I remember you,” he said with a smile.

Perhaps he says this to all his constituents but we’ve never felt someone, especially a politician, offer such a genuine confirmation that he knew who we were. They say pictures are worth a thousand words, and I’m wondering if the reason we have no picture of our meeting with Rep. Caul is because a thousand words wouldn’t be enough to describe this moment.

Knowing he had to get going, Jennifer told him we would leave some MI Choice information in his office. While he needed to get going, Rep. Caul stood there for a few more seconds to thank us for coming and for what we do to advocate for the needs of Michigan’s elderly and disabled citizens.

He shook our hands and then made it to his session a few minutes late, all because he took the time to listen to what we had to say.

We came home feeling so empowered and excited about the work we had done that day.

A powerful meeting: Jennifer with Sen. Cherry, who spoke about the power of advocacy

But it not only was for the work we had done to help ourselves, it was knowing our efforts also helped the people who weren’t able to be there to speak for themselves.

We always tell members of our MS self-help group they should be their own best advocates, and we encourage you to do the same.

Our fifth time we've met with Sen. Kahn to talk about the MI Choice Waiver Program

Find your passion and be a voice to make things better for yourself and for others like you. For example, if advocating for the needs of people living with M.S. is your passion, a great place to start is registering for the National MS Society’s Action Alert to receive news and information about M.S. advocacy news and legislative issues.

To borrow the line our respected fellow blogger Michael Gerber uses to conclude each of his posts at Perspective is Everything: “Participate. Make a difference. Live a life that matters.”

I hope the neighbors didn’t see me punch our mailbox.

On this day the solid black box, accented with its red arm and gold letters identifying it as belonging to Jennifer and me, served as a tangible representation of my Multiple Sclerosis.

And he had it coming.

OK, so I didn’t really punch it. I guess it was more like a smack. It was a my way of nonverbally saying, “So there! Take that, ya thug.”

For as much as I hope the neighbors missed my pseudo-mailbox beating, I pray they didn’t see me crying. OK, so I wasn’t really crying. I guess it was more like a muted sob. This was the day I feared would never come.

I hadn’t gone for a run in nearly two months. I don’t know how I did it, but sometime during a regular training run in early to mid February, I hurt my left calf. Turns out I tore a muscle and my doctor told me to take four to six weeks off from running. Jennifer, who was with me when the doctor handed down my sentence, said I started fussing like a little boy at the prospect of being off for up to six weeks.

“You were being a big baby, but you were kind of cute,” she said. Our doctor showed some leniency and said I could try it after three weeks to see how it felt. At exactly three weeks, I hit my regular trails lightly. And they struck back with a vengeance, making my recovering calf pulse in sharp pain.

So I took more time.

I know sports injuries such as this are not uncommon, and in some ways I was surprised it hadn’t happened before this. But with every day I wasn’t running, I feared MS was catching up with me. I had started preparing myself for dealing with the potential reality that my running days may be a thing of the past.

And I honestly thought my MS, after realizing it couldn’t break my stride by himself, had cut a deal with my left calf to help him bring me down. OK, I understand the MS can get me whenever he wants to, but this wouldn’t be the first time my body turned against me. After all, this is how the whole MS thing started in the first place as my immune system started attacking the healthy myelin surrounding my nerve cells, right?

At nearly seven weeks, I ventured out on the trails again. Half mile, no pain. One mile, no pain. Two miles, no pain. Two and a half miles, no pain. I was home, and this was enough for my first time out. Running never felt so good, and I was doing it. Again.

And so I smacked the mailbox – “So there! Take that, ya thug.” – and I fought back the tears until I was inside the house.

I’ve been out running a couple times since then appreciating every stride I take, slow and easy; more fully appreciating everything I have and can do right now. Everything.

This is what I have today.

We wanted to share with everyone the link to an incredible multimedia package about us that is in the April 25 Morning Sun’s print and online editions.

The project started when Morning Sun photographer Ryan Evon approached us about following us around to develop a photo essay for the area daily newspaper. This package represents more than a year’s worth of his work, and we couldn’t be happier with how it turned out. We are grateful for the opportunity to share our story and increase MS awareness.

Click here to see the story, photos and videos that tell our story and how we try to help others to move forward. Please check it out and share it with others! Thanks for checking this out an for visiting us on our blog!

Between a wall showcasing every major brand of running shoe in stock and a wall displaying the industry’s best wicking running apparel, the helpful salesman at Runners in Mount Pleasant squats and watches my feet as I walk back and forth on the uncarpeted section of the floor.

His analysis of my gait determines that I’m a neutral, meaning my foot absorbs the shock the way it was designed to, as opposed to landing heel first or landing on the very outside of the foot first. He tells me what type of shoe I need.

He smirks when I ask him to settle an ongoing debate between Jennifer and me about my status of “being a runner.”

Jennifer wholeheartedly professed that I was a runner, citing that I live and die by my Garmin GPS-enabled sports watch results each time I run and that I have respectful finishes in every race I enter. I, in turn, stressed that I wasn’t a runner. I merely was a guy who runs, pointing out that I maintained nowhere near the gazelle-like physique and pace of the people I pictured as true runners.

“You know what the difference is between a jogger and a runner?” he asks.

“An entry form,” he explains with a smile.

Near the finish line of the 8K race at the 2009 Crim

Following his logic, I’ll agree with Jennifer’s claim that I am a runner. But my numb feet always remind me that I am a runner who has MS.

Most races break down their entrants by specific age groups, not by whether or not they have MS. But if they did, I potentially have finished in the top five of this specific category in every race I’ve ever entered. Race forms will never single out runners who have MS, so I’ll continue comparing myself to other runners who likely aren’t living with this chronic disease.

I may never win any of the races I enter, but I always will have a decent showing because I’m there.

Despite my MS.

And with this New Year, on Aug. 28, 2010, for the first time ever I will run the full 10-mile route at the Crim Festival of Races in Flint, Michigan.

To spite my MS.

Happy Holidays and Happy New Year!

Have you enjoyed the last week? Busy celebrating with family and friends, I bet. So are you like me ­­- and I believe most Americans - a person who celebrates with food?

Well my holidays were wonderful, but I’ll be honest with you: I’ve been celebrating since Halloween. Somehow, it’s all been downhill since then.

First it was, “One little piece of candy won’t hurt,” then, “Oh I shouldn’t, but what’s Thanksgiving without at least a sliver of pumpkin pie?” Then to Christmas and two words: cream puffs. My mom’s are delicious. And come to discover, most of the people I’ve been celebrating with are great cooks.

Weight Watchers never had a chance, and thus the question I’m growing tired of: “Are you still doing Weight Watchers?”

First time I heard that, my answer was “Yep! I’m still down 55 pounds.” And I said it with pride. Sure, there was a little voice in the back of my head was saying, “Not for much longer if you don’t watch it.” But it was pretty easy to ignore because after all, I was going to meetings and still being somewhat mindful of a healthy diet.

However, the last time someone posed this question, I couldn’t say much. It was weeks since I had last attended a meeting, no boasting about my weight loss total. Instead I blushed, fidgeted uncomfortably and stammered, “I’m looking forward to starting again in the New Year.”

Well, here it is. And here I am - a place I’ve been before, but I can’t believe I’m here again. I must lose weight! Not just for appearance or clothes fitting properly or even for my health so much.

But it’s for Dan and my caregivers. And for what I still have that my MS hasn’t taken from me: my ability to stand and make transfers, and besides, managing my weight is something I still can control. Sure I find comfort in food but what comfort is food when my caregivers can’t lift me or Dan complains of having a sore back?

Gaining weight is selfish, and that’s where my MS is both a blessing and a curse. It’s a blessing because it gives me a very good reason to lose weight. It makes me realize that I function day-to-day with help, help that I want to and need to lose weight for. And it’s a curse because losing weight no longer is a choice I make on my own. The disease is indirectly calling the shots.

Any way you slice it, I am going to lose weight in 2010, for Dan, my caregivers, and most importantly for me. And as much as Dan hates it when I say it, I am so back on the horse!

Anyone want to get on their horse and ride along with me?

I think my mom and dad will be surprised to hear that a gift they gave me more than two decades ago is something Jennifer and I turn to often in dealing with the daily realities of multiple sclerosis.

I’m surprised myself.

After all, when you get confirmed in the Lutheran church, it’s expected that you’ll receive some sort of religious memorabilia commemorating the event. You know: it usually is something like a cross to hang on your wall, a religious plaque to set on your desktop or special coin to carry in your pocket to remind you that God loves you.

Mine was a red prayer book that has moved with me throughout Iowa and Michigan in a silver, black and white shoebox – like an honorary piece of luggage that accompanied me every time I changed my mailing address.

I always remembered “The Lutheran Book of Prayer” was in the shoebox, but it wasn’t until I was diagnosed with this chronic illness that I dug out the book and took its contents to heart. Looking in the table of contents, under the heading “During Illness” I discovered the prayer that has given me the strength I need to positively move forward through my life with MS.

And now, it’s a prayer that Jennifer and I read most nights before we got to bed, and we wanted to share it with you in hopes that it may provide you comfort in your life:

Gracious God, help Jennifer and me to accept your will in our illness. As your children we believe that you cause all things to work together for our good, both of body and of spirit. But sometimes in the midst of illness and pain we forget or doubt. Forgive our weak faith. When we become impatient, encourage us by your word. Despite our worries and suffering, help us by our lives to reflect the radiance and confidence of those certain of your promises of help. Restore us to sound health if it be your will, and enable us with new vigor and enthusiasm to serve you zealously for many years to come. Give us your Holy Spirit that we may always witness joyfully to our Christian faith before men and women, confessing that all life, on earth and in heaven, is a gift from you. O Lord, have mercy. Hear our prayer for Jesus’ sake. Amen.

Since I was diagnosed with MS, I’ve never asked God, “Why me?” Rather, I continue to tell God, “Help me.” And I’ve learned he’s always here, I just need to be open to where he’s offering a helping hand.

Even if it’s in a silver, black and white shoe box.