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!

Since I met Dan, I have never walked. But in my dreams, we often walk together into crazy, nonsensical adventure all of the time – hey, dreams don’t have to, and trust me, mine don’t, make sense. And I guess it’s good that I still walk in them because it reminds me what I’m fighting for. I believe, I HAVE to believe, I will walk again!

But am I really disabled?

Dan and Me - carefully cropped, as usual

You’d think, the wheelchair or the reality I can no longer roll over in bed, or get to toilet without help might tell me. But, un-uh. Still don’t see myself that way. As for those little blue wheelchair signs designating handicapped parking spots and restrooms, those are just signs. That’s not me!

This lack of acceptance, i.e. denial, might explain my constant frustration and frequent tearful outbursts when no one is looking. But those are mine to live with and deal with, and pity is certainly not acceptable or being asked for.

But again I ask, am I really disabled?

Recently, I was asked by the office of Student Disability Services to tell the Facilities Management staff at Central Michigan University how they could improve the handicap accessibility of their buildings. Guess that should’ve been a clue, but truly, it was the 2 women in wheelchairs I met that night that made me doubt the genuineness of my disability.

They were also providing the FM staff valuable feedback on building improvements. Only they were sharing stories of cruising their power chairs around campus, or through town, the daily difficulties of riding public transportation, or having to replace worn out wheels.

I couldn’t relate. After all, I ride in my van and can’t imagine driving my chair enough to wear out my wheel’s tread. Really, I’m only kind of disabled.

But when they started talking about getting stuck in the snow or having slippery wheels from said snow and about hard to open power assist doors. I started to relate.

Then the topic turned to the best handicap bathrooms on campus. And when we all knowingly exclaimed, “Library. Definitely the library.” It started to sink in. I was with my peers.

Sure my MS support group is full of people who understand this disease, but none of our regulars use a wheelchair. And Dan, he provides tremendous support and understanding. But it was in that room; with those women in wheelchairs that it began to be okay.

Yes, I really am disabled. And after not walking for the past 8 years, you are probably thinking, “Well duh! Finally.” But for the first time, I felt comfortable enough to say, “I am disabled.” (of course with the caveat, ”I make disabled look good!”)

And maybe now, I’ll even be okay with photos of me in my chair. Um … probably not. Call me vain, but I’m thinking I’ll still probably crop it out.

Dan & me at Walt Disney's Animal Kingdom

To treat my MS, I take a subcutaneous injection ever day, which is supposed to lessen the frequency and severity of my Multiple Sclerosis. After giving myself injections every day for the last 12 years, I guess it was bound to happen: I had to have an incident to remember.

And remember this one I will.

It was a little later than when I usually take my shot, but we were on vacation – getting away from it all. The day was pretty packed with activities. Eating dinner, taking my shot, and crawling into bed sounded like a perfect ending to a busy Disney day.

I took my pre-filled syringe from the refrigerator, pulled off the cap, inserted the needle into my stomach, and pushed on the plunger. But the plunger didn’t budge. This sometimes is typical because I’ve developed scar tissue from taking so many injections. And as usual, I asked Dan to push in the fluid. He pushed on the plunger, but it still didn’t move.

I gave it another try and in my brilliance, I thought, “Oh, just give it a little twist.” And the next thing I knew, I had a syringe in one hand, and a needle in my stomach. Understandably, I started to freak out. But I tried to stay calm, looking at Dan to fix it. I was pleading with my eyes, “Fix this,” and he was looking at me with confused, “I wish I could” eyes.

Just then, he took his fingers and tried to grab the pointed metal piece and well, you know how quicksand in movies looks? That’s how the needle disappeared into my belly.

Poof. It was gone.

“Oh no! Oh no! What am I going to do?” I frantically questioned.

Dan was as mystified as I was. What could we do? I tried to regain some calm and call the hotel front desk. They transferred me to safety, where I give the same story I just told you. Safety was as mystified. They told me to call paramedics, which I did. When the paramedics arrived I went through the whole story, again, and they said, “We’ve never heard of that. You should probably go to the hospital, and at least have an X-ray.”

So off to the hospital we went. X-rays were taken. At least three times, between doctors and nurses and X-ray techs, I heard, “Wow, never heard of that before.” Comforting, isn’t it? By about 2 a.m., after several X-rays turned up nothing, the doctor told me that he was going to let the needle work itself out, kind of like a sliver. After all, it would be more dangerous to perform surgery to remove something they couldn’t see.

And guess what I said? “Really, hmm, I’ve never heard of that before.” But I trusted him, and besides I just wanted to go home; home to Michigan, that is.

Because the reality is, when you live with a chronic illness like MS, you never really can get away from it all.

P.S. It really turned out to be a great trip.

P.P.S. Yep, the needle is still there

There Dan and I were, sitting at the table with two microphones, testifying before six Michigan Senators.

Dan was to my left and a gallery of about a hundred people sat behind us (thank God they were sitting behind us!) and listened to what we had to say.

The Region VII Area Agency on Aging had asked if we’d be willing to testify before a Michigan Senate Appropriation’s Subcommittee about our experiences with the MI Choice Medicaid Waiver Program. You know, that’s the one that provides the in-home care to help me with various activities of daily living, such as cooking, cleaning and grocery shopping, while Dan goes to work at Central Michigan University.

And when they asked, we jumped (okay not me) at the chance to share our story. We often say to our MS support group, “Be your own best advocate.” So when we were given this chance to speak to our legislators, we had to practice what we preach.

And it was WONDERFUL!

When all is said and done, we had the floor for about two minutes to tell how this program helps us to live our life together. And how incredible that these Senators, namely Sen. Roger Kahn and Sen. Deb Cherry, personally thanked us for coming, saying that it was nice to see the faces of the people MI Choice is helping.

 Thanks to Region VII that coordinates the caregivers who help me, many of our state legislators had already seen our faces and knew our story. The agency recently featured us on a poster displayed at a Michigan Legislative Luncheon in Lansing. And it wasn’t just a little poster. It was 2- by 3-foot displayed right there on the welcome table!

We hope that our story helps demonstrate to our State Senators and Representatives how this valuable program truly benefits so many people, as well as the state of Michigan.

With this, we’re even more excited about following up with our legislators at Older Michiganians Day in June, the same as we’ve done the past two years!

In other news …

• The current issue of Wartburg Magazine, the alumni magazine from Wartburg College (Dan’s alma mater), includes a well-written story about us and our efforts to inspire others and increase MS awareness. Check it out! 

• Speaking of current issues: The most recent post on Carnival of MS Bloggers features one of our stories! It’s really exciting to receive such recognition and be included in this online community of bloggers. Big THANKS to Carnival administrator Lisa Emrich for including us. She maintains a very active site that we’ve closely followed since we started a site of our own. 

From Herrad

 • And we were honored to receive a Big Red Bow Award from Herrad, administrator of the blog Access Denied–Living With Multiple Sclerosis. Check it out. Herrad is very sincere and we are so glad we discovered this very engaging and inspiring site!