On May 12, Dan and I will join our friends and family in Frankenmuth, Mich., for the National Multiple Sclerosis Society’s largest fundraiser, Walk MS. The walk is always a great event; good people, good times, an exciting atmosphere, weather that is often awful but despite that, the day is always wonderful.

This is the 10^thyear for our walk team, Team MonsterS. And I am the lucky captain of the team, which was among the state’s top 100 fundraisers in 2011. Yes, I’m so proud of our team.

Which makes it ironic when earlier this week my mom asked, “Don’t you ever get tired of asking for money?”

I enjoy the walk and am glad that many people and MS programs benefit from our efforts, but truth be told, it does get difficult asking the same friends over and over again for a donation.

I’m pretty confident they will always support my efforts, but still it’s tough to ask. After 15 years of my having Multiple Sclerosis, it’s hard to imagine knowing a single person who is not knowledgeable about this crappy disease of the central nervous system. Or a person whose life has not been touched in some way by this debilitating disease.

And as much as I like to pretend the disease doesn’t dominate my every moment, it does. And why shouldn’t it? After all, I face it every day. I realize its effect on my body, my ability (or inability) to walk, the wheelchair, and the burden MS places on my husband and me—the truth of life with a chronic illness.

I talk about it all of the time. And not just the bad stuff—remember MS was the reason for my meeting Dan, aka the man of my dreams. Heck, I once joked that I will talk about MS so much that someone will cure the disease just to shut me up.

For as tired as some people may get hearing about MS, imagine what it is like to live with it 24/7. But at least I’m living. There are much worse diseases and situations life puts us in.

When I think long and hard about my MS, my life could be a lot worse. We all are going through something. Strange, but that’s why I’m thankful for the chair. Most people treat me with a little more patience and kindness. From opening a door for me or grabbing a hard-to-reach item off a grocery store shelf, these little gestures make me smile. They are nice, but why does a person need to be in a chair for these little courtesies?

Like I said before, we are all facing some personal struggle. We should be kind to one another because you never know what that kindness will mean to someone else.

Be kind and supportive to one another. MS taught me that.

Memories of an old Nike advertisement when Charles Barkley proclaimed that he was not a role model got me thinking of something I am not.

I am not a caregiver.

I mean, I can’t be. After all, I am the one in the wheelchair. The one who no longer stands without help. The one who says repeatedly throughout a typical day, “Would you help me with something?”

I just don’t think of myself in a caregiving role. At least, I never thought of it that way. I imagine there are plenty of us in the MS community who see ourselves the same way; more of a caretaker than a caregiver.

If you tend to think of yourself in this way, STOP IT.

Read this post in its entirety to learn what epiphany Jennifer had about her role in our relationship:

Despite MS, I Am a Caregiver

Exactly one week ago today, I was enjoying the best concert I have ever been to.

Funny—it was a show by Bruce Springsteen and the E Street Band.

Yes, the 80s rock singer of Born in the U.S.A. The guy that led me to tell my mom nearly 10 years ago, after meeting my now-husband Dan, “Sure he’s cute and all but Mom, Dan likes Bruce Springsteen. Yuck!!”

But in these last 10 years, I’ve gotten familiar with and fond of Springsteen’s vast catalogue of music. It is so much more than Jersey bar band music and Born in the U.S.A.

I’ve even seen Bruce and company live in concert seven times, enjoying every single show.

Whether you like his music or not, there is no denying that Springsteen is quite a musical icon. And if you don’t like his music, I challenge you to sit through one of his three-hour performances and leave the concert saying that you are still not a fan.

The man is just that magnetic and ubertalented and hard not to enjoy. Simply put, he’s quite an entertainer. That, and as I’ve learned, he finds a way with his lyrics (or the way he performs them) to get you.

It seems most of his fans can pick out at least one such song.

For me, it’s Trapped. The song’s powerful lyrics were written by Jimmy Cliff, but Bruce and the band perform them in such a way that seems to understand, empathize with, and empower me in my life right now.

Last Thursday, April 12, in front of 18,000 screaming fans, Sprinsteen sang Trapped.

For those five or six minutes, I felt like Bruce was singing it right to me. It is a perfect anthem for me and those of us living with Multiple Sclerosis. Especially those of us “confined to a wheelchair.” I hate that phrase, but as much as I hate it, that is my reality.

This song gives me hope and makes me believe and feel powerful… do you see what I mean?

**************************************

Well it seems like I’m caught up in your trap again
And it seems like I’ll be wearin’ the same ol’ chains
Good will conquer evil and the truth will set you free
And I know someday I’ll find the key
Then I know somewhere I will find the key

Well it seems like I’ve been playin’ the game way too long
And it seems the game I played has made you strong
Well when the game is over, I won’t walk out the loser
And I know that I’ll walk out of here again
And I know someday I’ll walk out of here again

But now I’m trapped! Ooh yeah!
Trapped! Ooh yeah yeah!
Trapped! Ooh yeah!
Trapped! Ooh yeahhh!

Now it seems like I’ve been sleepin’ in your bed too long
And it seems like you’ve been meanin’ to do me harm
But I’ll teach my eyes to see beyond these walls in front of me
And someday I’ll walk out of here again
Yeah I know someday I’ll walk out of here again

**************************************

There are a few more lyrics, but I’m choosing to end with these.

Yes. Right now I’m trapped.

I’m stuck inside my body and held prisoner by Multiple Sclerosis. MS is evil. And I definitely believe good will conquer evil.

Yes. I know someday I’ll walk out of here again.

Jennifer and I have been together for nearly a decade, but she has yet to set foot into my parents’ home.

We’ve gone back to my hometown of Monticello, Iowa, to spend Easter with my family each year, but the three steep steps leading into their home make it impossible for Jennifer to get inside with her power wheelchair.

And so, we adapt.

Read this post in its entirety and learn how we make this possible:

Does MS Impact Travel Plans? Question of the Week

We write all the time but it is difficult to find the right words to describe how excited we are about our upcoming speaking event.

How great that we are going to share stories and excerpts from our recently published book – Despite MS, to Spite MS – in Dan’s hometown of Monticello, Iowa!

Monticello also is the location of Camp Courageous which, along with the National Multiple Sclerosis Society, is one of the two organizations benefiting from the sale of our book.

Camp Courageous is a year-round respite care and recreational facility for individuals of all ages with disabilities. Vision, mental, physical and other disabilities are typical of the individuals served. What an incredible opportunity to celebrate this connection with such a meaningful place!

Growing up in Monticello, I knew of the services and experiences Camp Courageous provided for individuals with disabilities. Over the last few years the people out at the camp, including Charlie Becker, have provided valuable assistance in making our trips back to Monticello a lot easier for us. We are glad to give back to Camp Courageous for everything it has done for us, as well as the community and those with disabilities.

In addition to the Monticello Public Library hosting and sharing news about our visit (thanks, Mom!) on April 7, local media also have helped to increase awareness about MS and our story. Check out what the Eastern Iowa Health posted about it last week!

We couldn’t be more thrilled about our upcoming event and hope to see a lot of family and friends and to make new friends as well.

This Lenten season our church – Immanuel Lutheran Church – developed a devotional booklet where different members of the congregation wrote their individual reflections on John 1:43-51. Here is the devotional we wrote that appears for today, March 12. How convenient that this appears during National MS Awareness Week, March 12-18.

We share Nathaniel’s uncertainty when he questions, “Can anything good come out of Nazareth?” When we both were diagnosed with Multiple Sclerosis, it was hard to believe anything good could ever come out of having a chronic illness.

Obviously, neither of us had a choice in whether we got this disease, but certainly we had a choice in whether or not to marry someone living with MS.

It’s like we each then served as Philip for the other and said, “Come and see.”

Through living with and sharing this disease, we see and follow Jesus every day. It has provided us the ability to see his light in the world and, in turn, to serve as a light for others.

We see Jesus when Jennifer is on CMU’s campus and a student pushes the automatic door button in anticipation of her entering the building. We see him when a neighbor snow blows the driveway so Dan doesn’t need to shovel it.

I see Jesus every time Dan ties my shoes. Puts my hair up in a pony tail. Helps me get out of my chair. And Jesus is there every time Jennifer sets out dishes and makes our dinner. Rubs my hands after a long day of typing at work. Picks up fun treats just for me when she’s at the grocery store.

We see him when a member of our church offers to share his generator should we ever lose electricity and need to warm our house or charge Jennifer’s chair. And Jesus is there when Jennifer’s caregivers provide us assistance beyond their scheduled shifts.

All of these blessings give us the ability to share our stories and be a light for others.

When we lead a support group to help people with MS, make dinner for a neighbor who just got out of the hospital, and continue living a positive life in spite of the day-to-day challenges we face.

Jesus is always around us. Sometimes we just need to take the time to pause and look in everything. Even in things that appear scary, isolating or difficult at first glance.

Where is Jesus? Come and see.

National Multiple Sclerosis Awareness Week is March 12-18, and we have an incredible opportunity to increase people’s understanding of this chronic disease of the central nervous system.

Central Michigan University’s Clarke Historical Library has invited us to present as part of its annual Speaker Series, and our event is set for 7 p.m. Thursday, March 15, in Park Library right at the heart of MS Awareness Week. Check out this flyer that’s being used to promote our special presentation, which you all are invited to attend!

And we encourage you all to do what you can next week (and throughout the year) to help get the word out about MS. Here are a five easy things you can do:

Make a fashion statement
Wear orange (the official color for MS) throughout the week.

Change your status
Visit the National MS Society website and gather MS facts to post in your Facebook status updates each day of the week. Want some help? Here are some to get you started:

• Approximately 400,000 Americans have MS, and every week about 200 people are diagnosed. World-wide, MS affects about 2.5 million people.

• Multiple sclerosis is a chronic, unpredictable disease of the central nervous system (the brain, optic nerves, and spinal cord). It is thought to be an autoimmune disorder.

• MS symptoms result when an immune-system attack affects myelin, the protective insulation surrounding nerve fibers of the central nervous system (the brain and spinal cord). Myelin is destroyed and replaced by scars of hardened “sclerotic” tissue.

• Symptoms of MS are unpredictable, vary from person to person, and from time to time in the same person.

Get involved
Go online and register for a Walk MS event in your area within the coming months. This is a great way to join others in raising awareness and funding that supports NMSS research and programs.

Share in our stories
Take a walk in our shoes and read our book, “Despite MS, to Spite MS.” And if you’ve already read it, encourage your friends and families to read it so they get a glimpse of what life is like for two people living with this disease.

Orange ya curious?
Visit orangeyacurious.com and share it with all your friends. You’ll be glad you did!

This is a great time of year, and we hope you have fun with it. And thanks for checking in with us and helping in our efforts to stay one step ahead of this disease.

All I remember is standing on the basketball court one evening at the elementary school I attended across the street from my home. I was taking a break from shooting baskets, and I caught myself staring at our family’s one-story light green house.

It was the last place I wanted to go.

I don’t recall exactly how old I was, but I was old enough to know the realities of a life lost after earlier in the day I had seen my dad cry for the first time. My mom wept with him and, seeing them both so sad, my brother, sister and I cried too.

Dad had received the call that his brother Jerry – my Uncle Doc – passed away at his home in Dyersville, the town where my dad and his 13 siblings had grown up.

It was going to be a sad night, a sad day tomorrow, and another sad day at the funeral when I knew I was going to see all of my beloved aunts and uncles cry as well. I had never see any of them cry before either.

All I wanted was a free pass.

I just wanted to make this all go away and get our lives back to the place where everything was familiar, comfortable and manageable again. I longed for something to fast-forward me past the sadness of my Uncle Doc’s death to the time where all this dust was settled and life was back to normal.

I realized one day it would be better – time heals all wounds – but I was afraid, and I just didn’t know how I was going to be strong enough to get through this.

And so, in my creative elementary school-aged mind, I developed a revolutionary thought:

What if when we were born, God gave us three coins – free passes, if you will – that we could use at any time in our lives. Three opportunities to fast-forward through a difficult time and pick life back up once everything returned to “normal.” We’d have the memories of the experiences we skipped over, but we’d be able to bypass and avoid the pain, fear, sadness and anxiousness that accompanies such overwhelming situations.

Three coins. But when they’re gone, they’re gone. This meant that you really would have to think long and hard, using them only when you were facing what you felt were truly going to be the most overwhelming circumstances you’d ever face.

With this revolutionary thought, I picked up my basketball and went home to face the realities I was avoiding. I realized that even if I did have three coins, I wouldn’t need to use one at this time in my life. I would be strong. This too would pass.

Through a series of sad days, seeing my uncle laid to rest and seeing my dad and his siblings cry together, each new day thereafter was less painful than its yesterday. Soon the dust settled and life was back to normal. I made it through, even without one of my three coins.

I realize such an outlook was developed by my elementary school self, but I’ve carried the three coins thought with me every day since.

I look back on all the times in my life where I wished these three coins were real. Times when I was afraid, and I just didn’t know how I was going to be strong enough to get through them, such as coping with the deaths of my grandmothers, getting diagnosed with Multiple Sclerosis and living through a previously failed marriage.

Through each of these moments, I had convinced myself that if I had a free pass I would have cashed it in and fast-forwarded through the difficult time. If this indeed were the case, I would have found myself today at 39 years old and without any of my three coins.

The reality is, it would have been wasteful to have cashed in my coins on any of these moments. I stand here today living a life where everything is familiar, comfortable and manageable, even after living through the pain, fear, sadness and anxiousness of events like the death of loved ones, an MS diagnosis and a divorce. And I didn’t need any coins to do it.

At the end of each day, I find comfort in knowing that with or without the three coins, I will receive the strength through my God, family and friends to make it through the challenges and difficulties in life.

Perhaps these are the three coins I was given when I was born – God, family and friends – and these collectively will be available to me in unlimited supplies to help me move forward through the most overwhelming circumstances I’ll ever face.

I often find ways here to incorporate a Springsteen lyric that inspires me in times of need, but here with my three coins, I turn to a scripture reading – Matthew 7:7 – that my Grandma Otten had hanging on a plaque in her kitchen that showed a picture of Jesus knocking on a door:

“Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you.”

Whatever your faith or beliefs, I wish you the best in discovering the three coins that will help you along your journeys through life.

We wrote an open letter to Bruce Springsteen before we saw him in concert a couple years ago. Assuming he didn’t get the letter (he didn’t play our request), we thought we’d try again for the concert coming up in a couple months…

Dear Bruce Springsteen,

As you scan the sea of signs surrounding the stage that plead for you to play one of your vintage classics at the Palace of Auburn Hills on April 12, my wife, Jennifer, and I won’t be there.

Instead, we’ll be holding up our “4 U” request all the way across the arena in one of its handicap-accessible areas. To see us, you gotta look hard.

While we could play the ticket lottery and get our numbers called to stand near the stage the entire concert, our Multiple Sclerosis forces us to stay in our reserved seats.

Combined we’ve had MS for nearly 25 years, and we each are living with very different forms of this disease. While I have the relapsing-remitting form and regularly compete in 5K runs, Jennifer has secondary-progressive MS and can no longer walk.

She uses a power wheelchair and this is why we must stay in the handicap-accessible area to experience the euphoria that you bring night after night after night after night.

Your music has 
pulled me through every phase of my life with MS:
 from fear and self-pity to anger and frustration and finally to acceptance and moving on with the vision of a brighter future. For that, I gratefully thank you.

And if it’s not too much to ask you for one favor: When you’re searching the fan-held signs for requests at the Palace of Auburn Hills in April, please look straight across the arena for my baby and me waving our sign asking you and the E Street Band to play a full-rocking “For You,” for us.

All the best,

Dan Digmann
Mount Pleasant, Michigan

As Jennifer is back in our Springsteen room developing the PowerPoint for her online class group assignment, I’m here at the dining room table finalizing a continuing education project of my own.

She’s closing in on earning her Master of Arts – or M.A. – degree in Humanities.

As for me, I’d like to think I’m in the middle of an essay for my M.S. – as in Multiple Sclerosis (rather than Master of Science) – program.

The reality is, she and I both already have our M.S. degrees. She earned hers in 1997, I earned mine in 2000.

I spend my workdays at Central Michigan University as the assistant director of creative services/editorial in University Communications. I concentrate on writing, reading and marketing stories related to higher education.

Acronyms are part of my everyday vocabulary. The most common include:

• B.A. (as in the undergraduate Bachelor of Arts degree)
• ORSP (as in CMU’s Office of Research and Sponsored Programs)
• Ph.D. (as in the Doctor of Philosophy degree held by the university’s respected faculty members)
• MAC (as in the Mid-American Conference in which CMU’s Athletics teams compete)
• M.D. (as in the degree that will be awarded through CMU’s new College of Medicine)

Interesting to note, though, that B.S. actually has two different meanings depending on the day. For the sake of higher education, it’s the undergraduate Bachelor of Science degree. For those of us living with M.S., it’s something we deal with everyday.

In the academic world, reference to the highest degree after a person’s name – such as John Smith, Ph.D. – demonstrates the work they’ve painstakingly invested in their education of choice. It also conveys the deep knowledge they gained in the process.

I applaud their efforts and humbly respect all their qualifications.

Needless to say, I smile each time I encounter reference to the M.S. degree and can’t help but think I should be able to use that after my name too. So should Jennifer and the more than 400,000 other Americans living with this disease of the central nervous system.

In our everyday world, reference to this chronic illness after our names – such as Dan Digmann, M.S. – would demonstrate the work we’ve painfully invested in our forced education. It also would recognize the admirable sense of personal determination we have discovered through the process of living with this disease.

I applaud all of our efforts and celebrate our abilities to rise above the adversity we face.

The parallels between a higher education degree program and living with Multiple Sclerosis are many. In the most elementary terms, we must look no further than the structure of how the academic programs are offered.

Most programs include required core courses that provide a fundamental background of the academic major or area of interest. Once the core courses are mastered, a student chooses electives that focus on a specific concentration.

For example, an undergraduate biology major includes core courses such as concepts of biology, general botany, genetics and microbiology. Electives then include courses that help the student pursue various careers, such as a high school physics teacher or a research biologist.

Likewise, people with M.S. are quickly thrown into a series of core courses that provide required knowledge of the disease. We first learn all about the inner workings of the central nervous system, expand our vocabulary to confidently use words such as “exacerbation” and “myelin,” and develop an understanding of the medicines used to slow the progression of our disease.

Then, we expand our knowledge depending on the course our disease takes. For example, as a person with relapsing-remitting M.S. I have become well versed in my understanding of foot drop and CCSVI. And through her secondary-progressive form of the disease Jennifer has had to concentrate more on adaptive equipment and related conditions such as trigeminal neuralgia.

With all the course foundations and continuing education requirements those of us with M.S. engage in, we’ve more than eared the right to include the acronym after our names.

But all things being equal, this is a program I think we all wish we could quit taking.