10 Seconds Can Change Everything

I completed my third half Ironman yesterday. It was the end of a busy six weeks of races that included a marathon, 5k, Olympic triathlon, sprint triathlon and yesterday’s Half Ironman. A lot of things didn’t go as planned yesterday beginning with setting up transition in a downpour. Rain was forecasted all day and I was nervous about the bike. That apprehension had been building from earlier in the week as the weather forecast gradually increased the chance of rain every day as the race approached. From the moment I woke up race morning, to waiting in line in the mud and rain to get into transition, and then hurriedly setting up my gear, I allowed myself to get more and more worked up about the day of racing ahead of me, and more specifically, riding in the rain.

Anything is Possible!

Shortly after I took my prerace nutrition another athlete shared with me that the start had been delayed by 30 minutes. An announcement I had clearly missed. That didn’t help my apprehension. So, there we were, 2,000 competitors waiting in a stead rain just wanting to get started. There were a lot of blank stares, nervous conversation, people shivering and more athletes than I can count that had decided to pull their bikes out of transition and not even start the day. As I stood there, waiting for the delayed start, I made the conscious choice to end the nonsense in my head and instead change my attitude to one of gratefulness. I truly am blessed to be healthy enough and have the means to do all the, what some people would call crazy, things I do.

The swim was rough. We were pounded with waves and it was quite the ride as the lake pitched us up and down. However, at one point, as I would turn my head to take a breath, I could see a patch of beautiful blue sky. It would be the only blue sky I’d see all day and it only lasted for probably a few strokes. It reminded me of the decision I had made on shore; to be grateful to be in that place at that moment. From that point on I knew that regardless of the day’s outcome I would be just fine.

Once out of the water we had to go through a literal mud pit to get to our bikes. Had Ironman added some obstacles in we could have had the first ever Ironman/Tough Mudder combo! I had a decent bike even though I was off from my overall time goal. I was OK with that given the wet pavement at the beginning of the ride and a really sloppy and slow transition area.

Is this an IM or Tough Mudder?

The run is where I like to hang my hat and yesterday was no exception. I began the run faster than planned as my legs felt really good. I knew I hadn’t pushed the bike as hard as I should have so I went with the faster pace, assessing it every three miles or so, and continuing to feel good, finished the run well ahead of my intended goal.

When I had crossed the finish line I was pleased with my effort and felt really good with how the day went. A couple hours later, however, I have to admit I was disappointed when I saw the final results and realized I had missed qualifying for age group nationals again by only one percentage point. (I missed by one percentage point at my first full Ironman last fall as well.) The difference; 10 measly little seconds! Immediately, I began to question specific points in the race. Had I been more strategic in the transitions would it have made a difference? Why did I stop at mile two of the run to use the bathroom? Especially since I never stop in a running race. So many points along the way could have made the difference.

After an evening and morning to reflect on it all I can say that I am very satisfied with the outcome. Compared to my first half Ironman three years ago I improved by 45 minutes on what was arguably a much more difficult and technical course yesterday. How can I not be encouraged by that? How can I not see that as a blessing? I’m not sure anyone who knew me growing up would believe that the small, scrawny, unathletic kid from Northwood Ct. would someday be knocking out endurance events on a regular basis and doing it well.

The lesson from yesterday for me is to make every possible moment in life count for something! We don’t know what is around the next corner, or what we may be faced with tomorrow, so make every second matter! Ten seconds certainly isn’t that long but in the case like yesterday it can seem like an eternity. That near miss of my goal just drives me to want to become even better, and not just athletically, but in my all aspects of my life. It reminds me that I need to put the same kind of focus and intensity into my relationships, as well as my intellectual and spiritual growth, as I do with my race training.

The choice I made to change my mindset prior to the race wouldn’t have happened in the past. It took a lot of work and even more mistakes to get to this point. I still don’t always get it right but I try and surround myself with some of the best people on this planet. Whether it be in my training, deepening my faith or sharpening my mind, I’ve discovered you can’t even begin to improve yourself if you aren’t willing to first put yourself out there and learn from other amazing individuals.

Surround yourself with great people!

I recently saw a movie about Jerry Schemmel and Brad Cooper, a two man, first-time race team that won RAAM, a bike race across America. Not only was the race grueling but the weeks leading up to the start were tough as well. Brad had a serious bike accident just six weeks before the start of the race suffering several fractures. Incredibly, he made it to the start line. One of the things they repeatedly focused on during their training and the race was this: Better Than Yesterday! That has stuck with me and if yesterday taught me anything it is that I need to take every advantage of every moment in life, every 10 seconds of life, to be better than yesterday.

Be Great! Be Strong! Be Determined!

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Kindness Starts with Each of Us

The tragedy that unfolded on the night of October 1st in Las Vegas is heart wrenching. There are families today that have been torn apart. Those that lost their lives, the injured, the survivors, the first responders, the doctors and nurses, even some of us that have now watched the events unfold, will forever be changed. Many people will be haunted forever by the sounds, smells and images they have experienced from this ungodly, cowardly act by a clearly disturbed and evil individual. As someone just watching the news coverage, even I find that the sounds of the repeated gunfire are etched in my brain. Nowhere in this great country that we live should everyday American citizens have that sound ringing in their ears. Can you even imagine what it was like to be there? What those people, out for a fun night, enjoying music, are now replaying in their minds. Many, if any, will ever be the same.

Some have said that now is not the time to politicize what has occurred. You know what, they are right, it isn’t. It is however, the time to act! Most Americans don’t want this politicized. This isn’t a right or left issue. This is a human issue! To be completely transparent, I am not a gun owner. Quite honestly, I am uncomfortable around guns even though I’ve used them. Every year at scout camp I enjoyed going to the range and shooting. As I became a young adult, however, guns weren’t something I had a yearning to have or go out and use. Having said that, I have no problem with neighbors, friends or others owning firearms. Certainly, that is their right and I believe it should be.

Where I have a disconnect with the issue is how can any reasonable person believe that it is OK for those with mental illness be allowed to own a gun? Why would we not require background checks anytime a firearm is sold? The second amendment gives us the right to protect ourselves surely. However, how can any reasonable person believe that we need a cache of automatic weapons to do so? The last number I heard was that the evil scum in Las Vegas had 23 difference firearms in his hotel room, many of which were automatic. In addition, he had countless more in his many homes. From a reasonable, logical, human standpoint that just doesn’t make sense.

Many people are calling on our government leaders to do something. Will they? I don’t know. It seems that the vast majority of Americans are in favor of laws for stronger background checks and the likes but it hasn’t happened. Instead, our leaders are currently working on a bill that will legalize silencers. Does that help address the problem of gun violence as it relates to the loss of life? We need them to work on legislation that addresses the more crucial issues. I don’t know if they will take action or not. I pray that they do. Regardless of what they do however, we can all choose to take action.We have seen a great outpouring of kindness since the tragic events on that frightening and disastrous evening unfolded. We witnessed it as well after recent hurricanes devastated Texas, Florida and Puerto Rico. These acts are heartwarming to see and I hope that they continue. We often see an uptick in kindness and giving when tragedy strikes. Let us all ask God to remind us daily, especially so when the memories of these tragedies are no longer fresh in our minds, that we need to act with mercy, kindness and love every minute of every day to all those that we encounter in our lives.

This should be our challenge; can we all be kind to one another in our actions on a regular, daily basis? I know it isn’t easy and, try as we might, we will all fail from time to time. However, if we resolve to make the world and our individual space in it, better and filled with more kindness every day, then I have hope that the senseless violence will not be so prevalent in our lives. Evil does exist and I am not so naive to believe it will ever be eliminated, but we have to do better in making sure that the voices and actions of good drown out those of the misguided and truly evil.

Admittedly, I don’t know what the answer is or should be. There are certainly opinions and arguments on both sides. That’s not the point. The point is that we need to come together and have open discussions and figure out realistic, reasonable solutions. That must start in our homes, at our jobs and in our one on one experiences we have with each other daily.

I get the argument that Chicago has some of the strictest gun laws and yet the number of murders committed with guns there is the highest in the nation. So, the laws we are passing aren’t working. We need to work together, executing common sense, and pass laws that will help make a difference. We must also realize that, no laws, however perfect one may feel they are, are ever going to eliminate evil. Can we reduce it though? We can. That is the goal.

When asked for advice by someone who didn’t want to do something but knew they had to do it, the first century Hebrew scholar Hillel responded with, “If not now, when?  If not you, who?” Now is the time and every one of us is responsible to act with kindness in our part of the world. There is no reason to wait. We need to live fully and freely without fear. If we don’t do that then evil wins.

Be Great!  Be Strong! Be Determined!

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Journey to Ironman

Shortly after I woke up this morning the countdown ticked off to only three days left until I hear the cannon fire indicating the start of Ironman WI! It will be the start of my first ever Ironman! I’ve been training hard since this past January, and some weeks that training has totaled almost 20 hours or more. The truth, however, is that I’ve actually been waiting for this day to come for the better part of 35-40 years!

This experience of training for an Ironman, while daunting at times, is one that I’ve rather enjoyed. I still recall watching the World Championships in Kona on TV as a child. I was mesmerized by the idea of these athletes swimming 2.4 miles, biking 112 miles and then completing a 26.2 mile run. I often wondered how in the world they could ever do that and believed it was something that I probably would never achieve.

You see, when I was a young child, I don’t even remember what age, we were at a party with an indoor pool. We were all playing in the pool and I remember going down a slide and into the water. The pool was very crowded and somehow I go caught underwater directly at the bottom of the slide. I couldn’t get out. As a young boy, it seemed like I was under there for an eternity. I eventually got myself out and spent the next minute or two coughing up water on the concrete deck next to the pool. I’m not sure anyone even noticed what had happened.

From that moment on I was terrified of the water. I wouldn’t go anywhere near it, let alone in it. Fast forward to when I was a teenager at summer camp for scouts. Again, I can vividly remember watching other scouts completing the mile swim in the lake and marveling at how incredible that was. They were swimming a mile!! Again, I put the notion of ever being able to do that myself out of the realm of possibilities.

Then, one of those summers at camp, the instructors at the lake decided I needed to get over my fear of the water. This may sound harsh but basically, they threw me in the water and worked with me to overcome my fears. I left that week no swimmer by any stretch of the imagination but I was able to put my fear of the water behind me. I could now get in the water without having a full blown panic attack. From there I slowly got more comfortable in the water but most certainly would never classify myself as a swimmer. I’m not even sure when or how it happened, but eventually I was comfortable enough to be just a recreational type of swimmer.

About eight years ago I began running. My first race ever was a half marathon. Just like swimming, I never really considered myself a runner and truthfully, for a number of years after that first race, I still didn’t. Do you sense a theme here? As part of my run training I began cross training on the bike and, because of different injuries, found myself in the pool trying to keep my fitness up and recover. Eventually, because of the cross training, I decided to enter a triathlon. I can’t say I ever got the triathlon bug but continued to do one or two every year.

Last year, I made the “mistake” of going to watch and cheer on a friend at Ironman Wisconsin. Many other friends, taking advantage of the adrenalin rush from watching this event, “encouraged” me to sign up for this year’s race. What can I say, I gave into the pressure and signed up.

Training for my upcoming Ironman this weekend has been tough. There have been obstacles and setbacks that I had to overcome. Trust me, the emotions over the past 9 months have been all over the board but one thing was always constant, not matter how good, how bad or how tough a workout was going, I NEVER QUIT! I showed up for every workout and performed to the best of my abilities on that day! Was it enough? I don’t know. I’ll let you know on Sunday night. I do know this though, whether I hit my goal or not, I have already won and received a valuable gift. I have grown and learned things about myself that I very well may not have had I not taken the risk and set out on this journey.

I’ve discovered two lessons during this process that apply to life just as much if not more than Ironman training. The biggest lesson I can take away from this Ironman journey is not to let your perceived limitations hold you back. I watched those Ironman events taking place in Kona and was in awe of the athlete’s abilities but never imagined the possibility of myself ever competing in an actual Ironman. I wouldn’t allow myself to think that it was even possible. I was putting limitations on myself for no other reason than I didn’t believe; I didn’t have faith! I was giving into my fears and not allowing myself to dream big enough. I think we do that a lot in our lives. We don’t believe we can accomplish something, no matter how small or large, and so we dismiss it.

The other lesson is that we can’t do this alone. I am forever grateful to the many people that I had the privilege and honor to train with over these past few months. I’ve grown some new friendships, rekindled old ones and further strengthened others. These are all amazing individuals that are going to crush it come Sunday. This lesson applies to life as well. We need each other not just to help us through our trying times but to celebrate our victories as well!

In the last eight years since I began running and competing in endurance events I’ve learned I am capable of much more than I ever once could imagine. It’s not just athletic endeavors either. I have grown and done more things in these recent years than I had probably done in the previous 39 years combined. Why is that? Because I began to believe that I was capable of anything I set my mind to. It made me realize that even the things I was scared of couldn’t stop or control me unless I gave that fear power to do so. Was it always easy, no? But, many things that bring us joy and fulfillment are often times not easy.

All of us, each and every one of us, venture out daily on our own Ironman journeys. Some are stronger than others and can face those journeys, the journey of life, easily and without much strain. For others it’s a little more difficult. No matter what, though, if we try, if we put forth the effort to keep moving forward, in the end we will win. We will succeed.

When the cannon goes off this Sunday at 7:00 am I will be ready. Ready to conquer the 140.6 miles that lie before me on that day. More importantly, ready to conquer what life has to throw at me beyond those 140.6 miles.

Be Great!  Be Strong! Be Determined!

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The Cubs’ World Series Win Beyond the Game

Cubs Win! Cubs Win! Cubs Win the World Series! Unless you have been living under a rock that shouldn’t be news to you. And in case you are wondering, no, I haven’t lost my mind. Before anyone accuses me of jumping on the bandwagon, let me make one thing perfectly clear – I still bleed Cardinal Red! That has not and will not change.

This Cub team, however, is undeniably great! Are they the best of all time? I’m sure that will be debated and argued about, but the truth is we will never know. The reality is that argument doesn’t matter. They were the best this year and right now that’s all that matters.

Cubs Champs

It has truly been a pleasure watching the pure and raw emotion of some of my Cub friends this season and their resulting joy. Others, well, they will never quite get it. No matter how successful their team was this year they still couldn’t help themselves from being negative; whether it was when their team hit a rough patch or their inability to resist the temptation to needle other fans rather than enjoy in their own teams tremendous success. You know who you are… um, wait, no, you probably don’t because ignorant jack wagons are just that. The inability to change their attitudes and their resulting actions shouldn’t prevent any of us from learning the important lessons this joyful event provided.

The Cub’s victory delivered to their fans, as well as to our country, more than just a victory, more than just a world championship. This talented group of players provided us with a glimpse of what we can achieve when we come together and never quit. The team and their fans showed us what we can achieve if we fight together for one common goal. In what is a very contentious, troubling time in our country with the elections, police shootings, racial tensions and more, their victory comes at a moment when we need something positive to bring people together for a common goal. The resulting unity from their victory provides us with many lessons.


For years, Cub fans have remained true and dedicated to their band of “lovable losers.” I know, doesn’t seem to fit anymore does it? This team, just like Jon Lester and Anthony Rizzo had done battling cancer not too many years ago, never quit. The Cubs fought and refused to give up even when, at moments, many of their fans may have assumed the goat was trying to get a ticket or that Bartman did and was lying in wait down the left field line. They proved that anything is achievable.


This team always believed. Without faith, we are nothing. You only need to look at World Series MVP, Ben Zobrist, to realize that. He is an example of what believing in God and having your priorities straight can do for you. He knows success is nothing if those priorities are out of whack. If your heart is in the wrong place, if your priorities are out of line, then any successes, any victories, just become hollow and void of any real meaning. We all have a God granted purpose and when we believe that and dedicate our daily actions to fulfill it anything is possible. It doesn’t matter what the naysayers believe or spew.

My friends Tom and Amanda who are huge fans!

My friends Tom and Amanda who are huge fans!


I was impressed by the Cub players and their manager. One of the first things many of them did after their victory was to congratulate the Indians and what fierce competitors they were. They knew that with one or two different moves the results could have been radically different. It takes a tremendous amount of self-knowledge and respect of your competition to acknowledge that.


The Cubs played their hearts out and their fans were feverishly supportive. Win or lose they would be champions at the end of the day. They, players and fans alike, had the courage to believe, to put it all on the line while respecting their competition. They were willing to accept the outcome win or lose. It takes tremendous courage to give your best when battling against a competitor that does the same. That type of fortitude is what makes champions.

So, why is all of this important? It’s important because it sheds light on what is possible in our society if, regardless of our beliefs, we set aside our differences and work together to solve the problems our country faces today. During the Cub’s run countless adversaries have come together and delighted in the joy of others. Barriers fell and the victory was shared and enjoyed. Can you imagine if we did that in other areas of our life as well? Can you imagine if, instead of always wanting, or needing, to win an argument we listened to one other with optimism and respect? Can you imagine, if at the end of the day, we had meaningful and open discussions about issues and problems? Can you imagine what would be possible? If that happened we would certainly see more joy and peace in our everyday lives.

My childhood friend John. One of the biggest Cub fans I know.

My childhood friend John. One of the biggest Cub fans I know.

At the end of the day we must acknowledge that this is just a game and that there are certainly far more important things in life. However, this game, this sport, which is woven into the fabric of our country, has taught us much. This year the Cubs’ World Championship leaves us with countless lessons that, if carried over into our daily lives, could help change the direction in which our nation seems to be headed. In a few short days our nation will elect a new president. Regardless of the outcome, hopefully the Cubs’ victory and the lessons from it can serve as a catalyst that brings us together to work with one another. I hope that it provides us with the beginnings of healing that we as a country so desperately need right now.

So, congratulations to the Cubs and their fans on what can only be described as a spectacular season. Spectacular because of what was accomplished on the field but even more spectacular because of what it has taught us in regards to coming together at a time when that is so badly needed. Enjoy the celebration and let that joy carry us to great things far beyond the ivy covered walls of Wrigley.

Be Great! Be Strong! Be Determined!

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Living with MS – Find Your Joy – Justine’s Story

In life we sometimes find joy in the most unlikely places.  For Justine Bemis, it certainly didn’t seem like the physical issues that began in the early 80’s would eventually lead her to a profound change in her entire outlook on life.  In 1984 Justine had surgery to correct a very severe case of scoliosis.  It wasn’t long after her surgery to correct the curvature of her spine that she just wasn’t feeling well.  As the doctors tried to determine what was going on Justine had a spinal tap performed.  She remembers it being a horrible experience and not being able to get out of bed for three days.  Justine hoped she would never have to endure anything like that again.

During that time the symptoms Justine was experiencing were consistent with MS but tests did not come back conclusively.  MRI technology at the time was not what it is today and the Harrington rods from her scoliosis surgery caused issues getting accurate readings.  Eventually her symptoms went away.  They would eventually come back and when they did they came back with a vengeance!

It began again simply enough in 1998.  Justine was tired all the time and most days she felt constantly lethargic.  She had dizzy spells as well.  “I felt like I had the flu all the time.  I also had terrible headaches.  They weren’t migraines.  They were very odd,” Justine recalls.

Justine went to the doctor to get some answers.  Initial thoughts were that maybe she had lupus or some other autoimmune disease.  Justine had one doctor appointment after another and several tests.  It became frustrating because all those tests and doctor visits resulted in no answers.  However, Dr. Stererret, Justine’s doctor, was undaunted.  He was determined not to give up, was very thorough, and kept searching for answers to Justine’s symptoms.

The lack of answers became increasingly frustrating.  Justine soon developed issues with her eyesight and her legs were always numb from her feet all the way up to her thighs.  “There was just nothing there,” Justine says.  Soon Justine began losing the feeling in her face and she had no sense of taste.  She could sense heat and cold but not much of anything else.

Justine was also experiencing weakness that progressed quickly.  It was so fast that there was a noticeable difference every day.  It continued to get worse as each day passed!  It wasn’t long and Justine started having difficulty walking.  Within months of developing the symptoms, she began using a cane.  “It would take me minutes to just walk from my desk to the other side of the office.  I would have to hang onto things to get there,” Justine says.

Justine was referred to a neurologist at the University of Iowa Hospitals to help figure out what was happening.  This was more than ten years after her previous MRI and technology was much better.  This time the MRI was more definitive even with the rods in her spine.  “They discovered that I had a brain,” Justine jokes.  “I found out that I had three lesions on the back of my brain and one in the front.”  The MRI results did point to a MS diagnosis but to be definitive the doctor wanted to do a spinal tap.  Remembering her terrible experience a decade earlier, Justine resisted but the doctor assured her it would not be as bad as it was previously.  Justine agreed to the spinal tap and, based on the results, she was finally diagnosed with MS.

Justine's Family

It was a very scary time for Justine and her entire family.  “It progressed so fast and so quickly that within three weeks Justine went from having some weakness to not being able to walk,” Justine’s husband Terry says.  When Justine went to the doctor she was sent straight to the hospital for steroid treatments.  Justine was there for a week and then spent another week at home not being able to get out of bed.

Justine had to begin weekly shots of Avonex to help combat her symptoms.  Terry had to give her the injections.  It was difficult for him to do that knowing that the drugs would make her feel like she had the flu.  “I also would get horrible headaches after receiving the shot.  They were just horrendous,” says Justine.  Justine continued to receive the injections for a year.  It cost them $1000 a month for four doses.  They could barely afford them but felt like they didn’t have a choice.  The drug was new and experimental but because of how fast she was deteriorating, Justine’s doctor wanted her on the medication to help maintain her current health.  Justine’s doctor couldn’t tell her how long she would remain at her current level of health before deteriorating further. However, he did say that her current condition couldn’t be reversed.  The doctor also told Justine and Terry that within a year she would be in a wheelchair and that they should begin to prepare for that possibility.

“We are people of great faith!  At the time, our older girls were in their senior and sophomore years in high school and our youngest was in eighth grade.  They were taking it very hard.  Every day they were seeing their very strong, vibrant mother fading,” Justine recalls sadly.  Justine was resting in her room one day and was very angry with God.  “I wasn’t a nice person to be around at that time.”  Shortly before Justine’s diagnosis she and Terry left very good jobs and moved to Dubuque to do what they believed God was calling them to do.  They were answering God’s call and this terrible, life altering event shook their seemingly perfect world.

Justine was angry and so was her entire family.  “As I lay there in my bed I remember I was reading my bible.  ‘Why did you do this to me God?’ I asked.  His answer, in that moment, was that you need to have joy in your life,” she recalls.  Justine decided to change her attitude that day.  Prompted by that conversation with God she began to try to find joy in everything.  “God revealed to me that I wasn’t doing that.  I was missing the joy in my life.  One of the fruits of the Spirit is joy.  Joy is not happiness.  Even when things are not good or happy you can still find joy in any circumstance,” Justine shares with a bright smile.

Justine and Terry

That day Justine and Terry began praying differently to God.  “My prayer was not that God would take away this horrible disease that I now had to live with but rather that we would trust God in whatever this would bring,” Justine says.  “It changed my whole outlook on everything.  God reminded me in everything that He is there for me.  We prayed to God for healing because He heals!”

Justine quit taking the medication shortly after that because the effects were horrible and she and Terry just couldn’t do it anymore.  “I didn’t want to give the injections to her anymore because who wants to give their wife something they know will make her sick,” Terry says.  The injections were also expensive, and although they seemed to help, Justine and Terry made the decision to discontinue their use and prayed to God.  When Justine informed her doctor that she wasn’t going to take the medication anymore it didn’t sit well with him.  He was upset with her and said that her Relapsing/Remitting MS would certainly get worse and not to expect any improvement.  Justine’s doctor said she could do as much as she could but it wouldn’t make her any better.  It wouldn’t change the outcome.  “Basically, he made me feel like there was no hope,” Justine recalls.

Justine refused to accept that answer and began to do extensive research to prove that prognosis wrong.  Everything she read pointed to diet and exercise.  All her research also said to keep moving!  “I felt as though I was being directed to be active.  I was never active and I certainly didn’t exercise,” explains Justine.  She joined a women’s gym and went every day over her lunch hour.  She began with simple exercises using small weights.  Before long Justine began to feel better.  Soon she didn’t need the cane to help her walk anymore even though she still had a pretty good limp.

After a few months of continued improvement, Justine decided instead of walking the three blocks to the gym she would run there every day.  “It was a real chore to walk the distance so the thought of running was a little absurd.  It really wasn’t running but it felt like it,” Justine says with a smile.  At the time when Justine decided to take up running, the notion seemed a little crazy because she still didn’t have any feeling or sensation in her feet and legs.  “To this day I still have those issues when I run and my feet often fall asleep,” she says.

As is common with being on steroids, Justine had gained weight and the new exercise program helped with losing what she had gained.  She also started drinking more water knowing that would help.  “I started eating for life and not just for the pleasure of food,” Justine says.

Justine Fun

In spite of all the improvements Justine has been blessed with as a result of her faith, exercise and nutrition she is still reminded that her MS is still there.  It hasn’t gone away.  Justine has issues with her eyes and suffers from optical migraines.  It is pretty scary for her when that happens but she typically has indications when she’s about to get one.  Justine has never gone blind in both eyes and for that she feels fortunate.  Like all people that suffer from MS, she also struggles with the heat.  During the warmer months she finds she gets worn down easier.  Terry gets upset with her when she insists on sitting in the hot tub but, “It feels so good!” Justine says.

Justine has become an avid runner and recently was sidelined for a month because of an ankle injury.  That was very difficult for her.  Justine believes running is one of the key things that have made a tremendous difference in her fight against the disease.  For that, Justine is very thankful and hopes she has many healthy years of running ahead of her.  “I’m probably as healthy as anyone in our family even though I’m older.  I can outrun and out walk all of them.  So it’s not something we talk about often,” Justine remarks in regard to how their family looks at her life with MS.

Both Justine and Terry agree that her diagnosis has made their faith deeper and stronger.  It has afforded them the opportunity to share their testimony.  It has given Justine a better understanding of how people have to deal with trials in life.  Justine strongly believes this has helped her become more compassionate and caring to others in need.

Justine has a hard time saying that she has MS because she certainly doesn’t appear to have any issues.  “Don’t ever give up hope.  It’s not a death sentence. There is life with MS.  Your journey will be different than mine.  Don’t compare yourself to someone else that you see because if they are worse that doesn’t necessarily mean that you will end up that way.”  Terry echoes those sentiments, “You can’t give up.  Your life is not over.  Listen to your heart more than your body.  Your body will say don’t do anything because you can’t.  Your heart will say, ‘No, get up and move!’  You need to!  Your heart can do more than your body thinks.”

Justine gives God all the glory for her remarkable improvement from what the experts said would surely be a future lived in a wheelchair.  “God said, get up and quit whining and find your joy!  Live every day for what it is and live your life!  No matter what life throws at you don’t let it steal your joy!”

Be Great!  Be Strong! Be Determined!

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Living with MS – Through a Child’s Eyes – My Story

It was in our living room on Northwood Court where my brothers, sister and I were told that our Mom had MS.  I remember the wallpaper on the main wall in the room.  It had a vertical flower pattern that kind of resembled corsages.  On both sides of the flower pattern were two lines with a smaller version of the flower between them.  The primary colors of the print were green and gold on a white or cream colored background.  Mom was sitting in a brown, wooden chair that had wicker sides.  There was a gold cushion on the seat and back of the chair.  Dad sat next to Mom and on that wallpapered wall above them hung two brown, wooden birds.

My brother Tim and sister were sitting on the couch that was along the wall to the left of our parents.  Mom was holding our baby brother.  The wall behind us had two dark wooden panels as accents.  One was wide and the other was narrow.  On that wall hung a huge painting, an oil painting that my Dad had painted.  It depicted an old man standing in a door watching a child ride a little tractor.  A woman looked out from an upstairs window.  For as long as I can remember that painting was there and now it is in my Dad’s studio in my parent’s home.  It’s funny how sometimes I can’t remember what someone told me five minutes ago, but I certainly always recall that room.

I knew mom had been sick, but I thought it was just the flu and would eventually go away. Truth be told, I didn’t think much about it. My eight-year-old self was busy going about the task of playing with the neighbor kids.  There was much to be done playing baseball, building tree forts, and catching crawfish in the crick we weren’t supposed to be anywhere near.  Eight-year-olds and children in general, even in their 40s for that matter, are selfish that way.

As a family, we were unsure, afraid, and overwhelmed honestly, about what was ahead for us.  What I remember from those first few years after Mom was diagnosed was that she was very sick and didn’t feel well at all.  Although we were all young, my parents did an exceptional job of helping my siblings and I understand what was going on.  Being the oldest, I felt an added responsibility to be the perfect child.  I was very quiet and didn’t dare do anything that would add to the stress I perceived my Mom and Dad were under.  I wasn’t perfect by any means, but I don’t believe I caused them too much grief.


What I didn’t realize at the time was what a significant influence my mother’s illness would have on my life and the man I would become.  Many days I watched my Mom struggle to get out of bed to take care of four young children.  MS stole many things from her.  The disease affected her motor skills.  Her balance wasn’t good at all and she fell; a lot.  She developed a noticeable drop foot when she walked.  In addition, she had double vision and was dizzy almost all the time.  It made her very ill and I likened it to having the stomach flu all day, every day.  I’m sure there were many other symptoms I didn’t even know about back then, but Mom wasn’t one to let anyone know about them.

I learned some very valuable things from her during that period in my life.  Most importantly were the qualities of perseverance and strength.  I then thought, and believe to this day, that if she could manage to get up and be a mother, and an exceptional one at that, while she felt so horrible, then there probably aren’t too many things in life that I couldn’t overcome.  In fact, those lessons have been put to the test more often than I would have cared for them to be, and every time I survived one of those tests it made me a better person for having gone through it.

“If my Mom, who has MS, can walk approximately 41,500 miles over the last 38 years, I can surely run a measly 176 miles in seven days for my segment of the relay!”

I always questioned, “why her?”  “Why my mom?”  Even to this day, I still question what I perceive as injustices in the world.  That’s just my nature and something I really struggle with.  However, her illness provided me with an invaluable gift—how to remain strong in difficult times and do what it takes to overcome and persevere.  That gift, in truth, was not just given to me but to my siblings as well.

Mom’s illness with MS also provided some very valuable life lessons from my Dad as well.  I never heard him complain.

Never about the factory job he went off to everyday, at an hour before anyone else even thought about being awake.

Never about coming home after a long day and having to help prepare dinner for the family, especially if Mom was having a bad day.

Never about having to help kids with homework or give baths and tuck little ones into bed.

My parents were truly partners in life; for better or for worse.  My father taught myself and my two brothers what it meant to be a man and take care of your responsibilities.  He was an example of how to be honorable and respectful not only to those you love in life, but to those you didn’t as well.  He taught my sister how she should expect to be treated by any man that showed her attention.  He taught us how to love.  He never had to tell us, we just knew by his actions and what he did for all of us and in the way he treated and cherished our Mom.


We all were also able to witness firsthand the generosity and selflessness of others.  It was truly a priceless life lesson.  When Mom was horribly sick neighbors and friends would stop by with meals.  They would help make sure my brothers, sister and I would get to all our activities.  Our neighbor, Bev, God bless her, would come over almost every day to make sure myself and Tim were ready for school and had our lunches packed.  She would then make sure the house was in order the way Mom liked it.  She did all of this and never once asked for anything in return.  Even when it meant putting aside things she needed done in her own home, she just did it.  Yet another lesson for all of us as a result of this horrible disease.

During those years and leading into my early teens, I developed characteristics I believe helped form me into the man I am today.  Those characteristics are a direct result of that time in my life and witnessing how my parents met the challenges in front of all of us, as a family.

When Mom was diagnosed it was a scary time, because not much was known about the disease then.  I remember going to a support group meeting as a family and many, if not all of the people there, were in wheel chairs.  I remembered thinking to myself, “Is this what is going to happen to our Mom?”  My Mom was and still is a very active woman.  That’s why it was so difficult to watch her be bedridden, sometimes for months at a time, when she would have an attack from MS.  I cannot begin to imagine what her and millions of others suffering from MS go through on a daily basis, especially when they are having a flare up as a result of MS.

“I am running for those that can’t because I CAN!”

I have distinct memories of Mom playing kickball in the cul-de-sac where we lived growing up. She would be out there with all the kids and would run to first base and jump up and down and scream with excitement. What I knew of the disease at the time was the ability to do that would quite possibly be taken from her, from us, and it might never happen again. I wondered if I’d ever see that excitement in the future. Little did I know that I most certainly would see that excitement again; because my mom’s a fighter! She refuses to give up and years later, after I took up endurance running I would again see that excitement. Every time she comes to watch me race I get to see it. I’ve never told her this, but I look forward to that each and every time. It has an incredibly special meaning to me. It’s like being that little boy in the cul-de-sac again.  I am thankful to God that I still get to witness it.  When I go by she actually looks like she’s going to jump out of her skin and I’m pretty sure the strain on her vocal cords is more than should be comfortable!

Mom Cheering

My Mom has been my inspiration to continue to push when it feels like I don’t have anything left to give.  She is determined to define her life, rather than letting MS define it.  It is her un-daunting example of determination that has led me to do many of my endurance events in the past several years.  It is also why when I heard about the MS Run the US Relay across America that I knew I needed to join the team.  Mom still walks three miles a day.  If my Mom, who has MS, can walk approximately 41,500 miles over the last 38 years, I can surely run a measly 176 miles in seven days for my segment of the relay! It is because of her example that I have the determination to join the fight against MS!  I am running for those that can’t because I CAN!

I’m looking forward to helping Mom realize a long time desire when I cross the finish line of my segment for MS Run the US. She will be there with me and it won’t matter that it’s not 50 miles but rather 50 feet.  I will be alongside her to make sure she doesn’t fall and she will cross the finish line; running!  I’m sure the excitement and joy I’ve come to love seeing while I’m racing will be there tenfold.  Only this time, it will all be for her.

While I do wish Mom never had to endure a life with MS, at the same time I would have to admit, in some ways, I’m thankful for it.  MS has absolutely taken much from our Mom, but it has also given our family so much.  Not having endured the challenges MS presented our family, I’m not sure that we would have learned all the lessons we learned.  Would we have become such determined and perseverant individuals?  Would the gentle, kind, selfless and bold love from our Dad have been as obvious?  Maybe, but maybe not.  We may never know, but one can’t ignore the results.  So, for that I am thankful.  Most importantly, I am thankful for the gift of my Mom and Dad, because their faith, love, and choice to deal positively with this life altering disease taught all of us so much.

So yes, I remember when my brothers, sister and I were told that our Mom had MS.  It was in our living room on Northwood Court.  I will never forget the beginning of one of the greatest lessons of my life.

Be Great!  Be Strong! Be Determined!

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Living with MS – Second Chances – Coni’s Story

In life you don’t often get a second chance to make up for previous missed opportunities.  Coni Stephenson is getting that chance thanks, in large part, to a decision she made three years ago regarding the treatment of her MS.  Coni was officially diagnosed with MS in June 2011, and it was a long road to arrive at that diagnosis.  Coni remembers not feeling well as far back as 2002.  During that time she couldn’t even enjoy simple things like playing with her grandchildren.  At times the entire left side of Coni’s body was numb.  She realizes now that she was probably having flares associated with MS.

Beginning in 2002 Coni became very ill and was very weak and dizzy.  Coni’s legs also felt very heavy making it difficult to walk.  Coni’s white blood count was elevated and her doctor put her on antibiotics believing it was some kind of infection.  At first, things got better but then worse again.  This went on for four months and eventually her doctor sent her to a neurologist who found spots on her MRI but no other tests indicated MS so he said Coni was depressed.  “Of course I was depressed.  I hadn’t felt very well in months,” Coni explains.

Coni never really did recover and struggled on and off for years.  In March of 2009 Coni’s mother was diagnosed with lung cancer and passed away the following month.  It was a very stressful time for Coni.  The remainder of that year Coni experienced numbness and tingling on the left side of her body frequently.  In the spring of 2010 she developed vertigo.  That fall Coni had an MRI and the results showed multiple lesions suggesting MS.  Coni was referred immediately to a neurologist and continued to see him every three months.  Her doctor at the time never did give her a MS diagnosis but, because her lumbar puncture was negative, called her condition MS suspect.  In June of 2011 it was no longer suspect.  Coni developed optic neuritis and by the time she saw the neurologist she could barely see out of her right eye.  Coni was treated with IV steroids and then Copaxone.  After the initial IV steroid treatment, Coni still didn’t feel well but she could at least function.

Coni Daughters and Granddaughters

A little over a year later, in the fall of 2012, Coni had another flare from her MS.  This time she was off balance and dizzy.  “I had issues throughout the years and I’m now sure it was caused by MS flares but I was never officially diagnosed,” she says.  Coni’s next flare came quickly after and she distinctly remembers the day.  It was March 17, 2013.  Coni again had terrible dizziness and had trouble walking on her own.  She had to go through IV steroid treatments for the third time.  “I just thought, ‘I can’t do this again,'” Coni recalls.  “Taking 1,000 milligrams of steroids a day is horrible.  I couldn’t sleep.  I developed anxiety that required me to take medication in order to function.  For the three days I am on the IV treatment I can’t work.  It is that bad.  I would have to take a full week off before I could return to work.  The steroids would help improve the symptoms almost immediately, but the side effects were horrible and I didn’t like what they did to my body.  When the steroids were stopped, I would fall into a deep depression and I just wanted to die,” Coni says.

Fortunately, Coni had some great family friends that suggested she try acupuncture to see if it could help.  Her friends believed so strongly that it would help her that they offered to pay for the treatments.  After three major flares so close together and struggling miserably with steroid treatments, Coni felt it was worth trying.  The course of Coni’s disease and treatment changed in April of 2013 when she was introduced to Katie Blair.  Katie is a licensed acupuncturist and Coni credits her with turning her life around.

Something amazing happened during Coni’s first acupuncture treatment. For years, Coni was always hot. She could never do much to cool herself down.  After the treatment was finished Coni asked Katie if she had turned the air conditioner on because for the first time in a long time she felt cool.  No adjustment had been made to the thermostat!  Coni noticed immediate improvement after only a couple of treatments.  Coni hoped the acupuncture treatments would reduce the intensity of her flare ups.  It would be a dream to not worry about having flares and wondering when the next one would occur.  Coni knew the acupuncture was making a difference in answering her prayers as she continued to feel better.

Even though the weekly acupuncture was improving her condition, Coni’s doctor continued her on Copaxone.  In July of 2013 she had a severe reaction to the drug.  “It felt like I was having a seizure only I was awake. I couldn’t get warm, was shaking and I was afraid I was going to bite my tongue,” Coni recalls.  Coni stopped taking the medication but the doctor on call felt it wasn’t a reaction.  She advised Coni to continue taking it to minimize the effects of another flare. Coni began taking it again and experienced the same symptoms.  Coni had previously talked to another MS patient that stopped taking the medication after experiencing similar issues.  Coni called the drug company’s nurse and was told her symptoms were definitely a reaction to the drug.   Coni stopped taking the drug and hasn’t taken it since.

Coni’s neurologist was not deterred and began treating her with a new oral medication.  In under a month Coni was feeling terrible from the side effects.  “I felt like my stomach was going to blow up,” she recalls.  This entire time Coni continued to receive weekly acupuncture treatments.  Coni spoke with her neurologist and they agreed to try and manage the disease with no medication.  They also scheduled a MRI in six months to make sure the disease was not progressing.  Coni was thrilled because the steroids and MS medications did a lot of bad things to her and the side effects she experienced were horrible.  After six months of only weekly acupuncture treatments, Coni had the follow up MRI and she couldn’t have been happier with the results.  The scans showed no changes to her prior MS lesions.

Coni and Grandkids

Coni was in her late forties when she first began to notice problems related to MS.  “I just pray now that if I have another flare it will be milder,” she says. “I am fortunate.  Because of the acupuncture and other changes I’ve made I can now do everything I used to do except mow my lawn.  I don’t do that because my neurologist warned me not to get too warm.  Most of my flares occurred in the summer so staying cool is important.”

Along with the acupuncture, Coni also changed much of her lifestyle and now uses all natural body products.  Coni is also making changes to her diet and the way she eats.  She is noticing a difference in how she feels as well as losing weight.  “I have been a nurse for more than 36 years and I have always believed in medicine.  I never thought much about a holistic approach but now I have a whole new outlook on it,” Coni says.

When Coni first began experiencing symptoms related to MS she was quite sick.  Coni had always been very active but had to alter all the extra things she had going on in her life.  Gone were the community meetings she had outside of work and committees she was on for her church.  She just couldn’t do them anymore.  “When I would go to work after a flare I would still be off balance at times and have to hold onto the wall to walk.  I realized quickly that I had to learn to take care of myself.  I used to take care of everyone else first.  I figured out that I wasn’t any good to anyone, including myself, if I didn’t attend to my own needs first,” Coni recalls.

MS affects each person differently.  Even though you can’t see it there are a lot of difficulties that you can’t explain unless you experience it.  “As a nurse I thought I knew what fatigue was.  Now, having to live with MS, I really know what it means.  I have been to a point where I couldn’t even walk up my steps to go to bed at night.  I don’t want other people to feel sorry for me or treat me any different.  I also realize I can’t be too serious about it either.  I make jokes about it.  If I can’t remember something I just say that thought probably landed on an MS lesion,” Coni says with a little laugh.

Coni’s family and friends did feel bad for her and the many difficulties she has gone through.  The loss of her mother was devastating, but they were there for her.  “I have been blessed with wonderful substitute mothers who have watched over and prayed for me.  I also have great family and friends.  My family and children didn’t understand the effects of MS until they saw me in a flare.  That was scary for them!  Their mom, who was always able to do everything on her own, now needed help.  I think I, like others, had some denial of the illness and hoped it would just go away.  After the second flare I realized I couldn’t deny anymore that I really had MS.  I had to figure out how to manage it.”

Coni and Son

Coni’s last MRI was a year ago.  She had no progression in the disease and her doctor thought that the lesions might be improving.  That is significant because typically treatment of MS is limited to keeping the disease from progressing rather than improving it.  “Honest to God, when Katie puts the needles in for a treatment it really works.  I’ve gone in before with numbness in my leg and when she puts the needles in my leg it will start twitching and it’s like the numbness is leaving my body,” Coni explains.  One thing Coni can’t stress enough is that if you are going to try acupuncture make sure you go to someone that is licensed.  She has also found that, in some cases, insurance covers treatments.  Coni has become an advocate in helping others seek treatment as well as helping them figure out if the treatments may be covered by insurance.  It is a way for her to give back.

Coni lives life differently now.  She listens to her body as well as her emotions.  After her second flare she decided to go on an antidepressant because the disease and the medication can bring anyone down.  “It’s OK to do that.  Sometimes it’s necessary in order to help move you in the right direction,” Coni explains.

Coni also doesn’t let anything hold her back from living a full life.  If an opportunity presents itself for trying something new she does it.  “If I feel well, I just go because I never know what may happen.  Tomorrow I may not be able to do it so I’m not going to miss an opportunity,” she says.  “I now pretty much go from the minute I get up in the morning until I go to bed at night.  Prior to seeing results with the acupuncture and feeling better I could never do that.  I just didn’t have the energy.  I am babysitting my granddaughter right now and it is great because I feel like I’m getting a second chance.  I wasn’t able to do a lot and enjoy my older grandkids as much as I wanted to because I just didn’t feel well.  Now I can do what everyone else does.  MS isn’t a death sentence.  It isn’t!  It is, however, a chronic illness and it has to be managed.”

Coni has a new appreciation for this second chance she has been given.  It has helped to lessen the debilitating affects MS has caused not only on her body but her emotional state as well.  Coni has made a lot of changes in how she treats her MS.  She takes care of herself so she can be around for all of her children, grandchildren, family and friends.  As she plays with her newest granddaughter she has renewed hope that her granddaughter will know and remember her as an active and involved grandma that loves her!


Be Great!  Be Strong! Be Determined!

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Lessons In Boston and Beyond

I ran today for the first time since tearing my calf muscle in the Boston Marathon almost three and a half weeks ago.  I felt an incredible sense of joy and freedom in my run this morning.  This morning’s run was in stark contrast to the last time I ran.  It was just me, the outdoors, my iPod and God.

Boston was filled with fanfare, cheering crowds, high expectations and what was supposed to be a great run with friends as we made the 26.2 mile journey from Hopkinton to Boston.  That wasn’t to be for me on that day.  Almost right away I knew something was not right with my calf.  Truth be told, I knew it in the week leading up to the race but denied it.  I wanted to believe I could do marginal things to take care of myself and make it work.  Within the first quarter mile I knew it was going to be a long day.  My calf was tight and after I had gone the first mile it just wouldn’t loosen up.  Gone already, I knew, was the plan of running and enjoying the day with friends.

Then it happened.  At right around the third mile it felt like someone ran up behind me and stabbed me with a knife in the back of the leg.  I pulled up immediately and initially couldn’t put much weight on it.  There were countless spectators encouraging me to walk it off.  “You can do it buddy!” they yelled.  My immediate thought was, “Are you kidding me?  I have 23 miles to go!”  I was angry and frustrated!  Soon, my trepidatious hobble became a walk and then I got impatient – It didn’t take long.  I began to run again.  By mile five my average pace was over 12 minutes per mile.  I didn’t have my iPod so there was no music to help distract the crazy thoughts that flowed through my head.  My friends were far ahead by now and I was left with the thousands upon thousands of cheering spectators and those thoughts that seemed to number in the thousands as well.

I settled in to, as some say, “Embrace the suck!”  It was going to be a much longer day than I had planned on but this was Boston!  Each and every step that day hurt.  If I didn’t focus and stepped wrong it hurt more.  After a while though, something happened.  I’m not sure how to explain it or how it was happening but by the halfway point I was turning out sub nine minute miles.  It certainly wasn’t graceful but I was moving.

Grinding through Boston

Grinding through Boston

To convey all the thoughts that went through my head that day would be next to impossible.  I was wearing one of my MS Run the US Relay shirts that day.  Much of my motivation to keep going was knowing that the pain I was experiencing that day; the disappointment I felt that day; the thwarted plans for the day, paled in comparison to the millions of people suffering from MS on a daily basis.  I knew at the end of the race or soon after that I would find relief.  People suffering from MS, as well as many other chronic diseases, never find relief.  They never get a break!  It’s not temporary!  It doesn’t go away!  Unlike me, they don’t have a choice.  I could have stopped at any one of the medical tents along the way and ended the temporary pain.  That is not the case for them.  They get up every day and face their day courageously, not because that is what they want to do, but because they have to.

I heard hundreds, actually probably thousands, of people cheering for MS.  All along the way people were yelling to stop MS!  I often wondered, with my altered running form that day, if people thought I had MS?  It didn’t matter.  I was proud to be out there and helping to raise awareness.  Awareness is the key to helping us beat the disease!  Those cheers and thinking about all the people I know with the disease kept me going.  In my own suffering, knowledge of their everyday fight was amplified.  It pisses me off that they don’t get a day off from the disease!  I knew I had to keep going!  I had to finish!  I just had to!

Through my stubborn determination to finish and try to help others by raising awareness I was also blessed with some incredible reminders in the form of lessons that day.  Some I realized immediately that day and some have begun to reveal themselves in the weeks since.  The injury forced me to slow down and realize I needed to take a “life inventory” and perhaps make some adjustments.  I quite possibly would have missed that had the day in Boston played out differently.  Because of the lessons I’ve learned I’m thankful it didn’t.  Here are some of the loudest reminders – so far.

You Can’t Outrun Denial

I knew I had issues with my calf going into the race that day.  I attempted to convince myself that everything was OK and I’d be just fine.  The problem was, I knew everything wasn’t fine but chose to ignore it.  That certainly is a reflection of life at times.  We believe we can choose to ignore issues or problems in our life and that they will go away.  If we pretend they aren’t real then they don’t exist, right?

My experience in Boston that day certainly reminded me of how wrong that thought process is.  Denying what is directly in front of you may often seem easier than addressing the issue.  Taking no action at all can appear to be the easier path to travel.  Frequently though, if not always, it leads to more difficulty.  Why? It’s because we are too afraid and cowardly to address the issue directly in front of us.  We’d rather avoid something that may be difficult so we can placate our temporary comfort in the moment.  Unfortunately, that approach doesn’t often serve us well and quite often causes more pain and frustration in the long run.  We end up even more uncomfortable.

Finishing at Boston!

Finishing at Boston!

Joy Needs to Be Recognized

Another incredible outcome from that day was a greater appreciation for joy!  If I’m being honest about it, this is something I struggle with.  I believe it has a lot to do with not living as I should in the moment.  As I look back on that day, I realize this is something I need to really put some focus on.  I have had several reminders since race day and for that I am thankful.  I need those reminders often and am trying to become more intentional in my actions; to live more in the moment and enjoy it for what it is.  Life is too short to live with regret.  This became incredibly clear to me as I looked at countless pictures from that day and the pure joy and smiles that were on many of the faces.  To my friends who blessed me with your joy – Thank you!  You have no idea how much those images have meant to me in recent weeks.  I’m sure you know who you are but if you are wondering just look at the pictures – it’s obvious!

There’s a Fine Line Between Selfishness and Selflessness

It’s been a long few weeks since Boston.  At times I’ve worried if I had been too focused on my own selfish desire to finish for the benefit of self-induced glory.  Did that selfishness screw up the bigger picture for this year which is to successfully complete my segment in the MS Run the US Relay?  I was so focused that day on my own desires that I temporary forgot about the bigger picture.  That selfishness also had me concerned that I was letting the people in my life down by not going fast enough and possibly not even finishing.  I am beginning to realize how wrong that was.  It doesn’t matter how fast I go or, in the case of races, if I even finish.  I found out later that many, as they tracked my progress, couldn’t figure out what was going on and were worried.  I could have alleviated all of that if I would have just stopped and let them know I was hurting, but was fine.

I’m realizing now that sometimes there is more honor in stepping back, re-evaluating and then moving forward in a prudent and thoughtful manner.  That doesn’t mean we shouldn’t have spontaneity in our life but there is a time and place for it.  It’s a balance and each person just needs to figure that balance out.

I honestly was nervous as I set out this morning on my first run since Boston.  I wasn’t sure what was going to happen.  I didn’t know if my leg was ready for the stress of running.  I almost made the choice not to go.  If I didn’t attempt to run I was sure my calf would continue to feel fine.  That would have been sad and disappointing.  All the lessons and reminders I was presented with over recent weeks would have meant nothing.  I would have ignored all the great things this experience had revealed.  I needed to trust everything would be alright – yet another lesson in this process.

And so, this morning, I ran.  It was just me, the outdoors, my iPod and God.  And for that, I am thankful.

Be Great!  Be Strong! Be Determined!


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Living with MS – A Walk of Love – Penny’s Story

Penny Ehlinger was a young mother of four small children and couldn’t understand why she was always exhausted.  While pregnant with her third child, Penny was continually dizzy and had trouble with her balance.  Her doctor told her it was due to the pregnancy.  However, after Penny’s daughter was born, the symptoms didn’t go away.

Penny’s husband, Jim, remembers one night, while they were walking across a parking lot, Penny’s leg just gave out.  Fortunately, Jim was there to catch her.  Penny also recalls a time when she walked across the street and the neighbor asked her why she was limping on her right leg.  Penny just assumed it was weaker than her left leg and didn’t think any more about it.  Denial is a powerful thing!

Life continued on for this busy mother and, three years later, Penny was pregnant with her fourth child.  After she gave birth, while in the hospital, she had a major exacerbation from MS but no one realized it.  Penny continued to be really sick for the next 3 ½ months.  Then, one morning, Penny woke up and looked at the alarm clock.  Everything was double; severely double!  Penny couldn’t see well at all.  She went to an ophthalmologist and he confirmed that she was having double vision but couldn’t find anything physically wrong.  Penny was sent home with instructions that if it continued for more than a few days she should see a neurologist.  Penny went home and the double vision didn’t get better; in fact, it got worse!  Within a week Penny couldn’t use her right leg.  “I couldn’t even manage to get out of bed and make it to the bathroom on my own,” she says.

Penny explains that the overwhelming anxiety she experienced at the time was off the charts.  “I felt like I was going to come out of my own skin!  I knew something was seriously wrong.”  This was in 1978 so there was no Internet to explore.  “We had a set of encyclopedias so I tried doing what I could to find an answer – any answer,” Penny explains.  That was no easy feat for someone who was having vision problems.  It took a lot of time and patience.  Penny diagnosed herself and feared she had Multiple Sclerosis.

At the time, Penny had a wonderful Christian man as her obstetrician.  “I remember one night after Jim spent the entire night awake and holding me that he called Dr. Straub,” she says.  Dr. Straub immediately admitted Penny to the hospital and made arrangements for her newborn baby to stay with her in the room.  Penny was breastfeeding and she refused to go without him.  A neurologist examined Penny and discovered that the entire right side of Penny’s body was neurologically affected.  The neurologist asked if she ever had to lift her leg up with her hands to get in the car.  Penny said that indeed she did.  He asked her if she thought that was odd.  “I never really gave it a thought,” Penny recalls.  “When you have four little kids you just keep keeping on.”

For months, things didn’t get any better.  Penny would spend most days in bed, only to get up and use the bathroom.  Penny’s mom would come in the morning to get the older kids off to school and take care of the younger two for the day.  Grandma Millie would stay until Jim got home from his factory job in the evening to take over.  Jim would make supper, help kids with homework, give baths and put the kids to bed.  Penny and Jim also had countless neighbors and friends who supported the family as well with regular meals and carpooling.  Penny’s neighbor Bev would check on her every morning and make sure beds were made, dishes were done and anything else Penny or the kids needed.  Penny recalls those days:  “I became very anxious and cried a lot!  There was lots of crying.  I needed someone to tell me what was wrong.  I had four little kids.  It was very scary to think that I could have this dreaded disease and I might not be able to take care of my own kids.”

Penny's Family

During the course of those months lying in bed, the anxiety became unbearable.  Penny couldn’t shake the extreme feeling of despair she was experiencing.  As a once very active mother, all Penny could manage to do was have her baby lie next to her and nurse him when needed.  On a good day, she might be able to help her oldest two sons with their spelling words.  There weren’t many of those days though and she was scared.  Very scared.  “There were a lot of tears and prayers.  I had so many questions that couldn’t be answered.  I just wanted to raise my kids by myself and I didn’t know if I would be able to do that,” Penny explains.  “My daily prayer was, please God – please let me raise my children!’”

At the time, almost 40 years ago, when someone was diagnosed with MS it was through a process of elimination.  There were no MRIs.  There was no definitive way for doctors to say, “You have MS.”  It was a very lonely, lengthy and frightening process with a lot of ups and downs.  Many years later Penny had MRIs so that she and her doctors would have a baseline to refer to for future attacks.  “I remember when the doctor called with the results of my first MRI.  I quipped, ‘Good news?!  I don’t have MS!?’” As hopeful as she may have been that wasn’t the case.  The scan showed lesions on her brain and confirmed the diagnosis from years earlier.  Penny didn’t look at that scan or subsequent scans.  “I don’t want to see them.  It would just make me think that IT was going to get worse.  It is what it is and seeing the scans won’t change that.”

MS affects each person differently.  Each patient can have different symptoms and the severity of the same symptoms can vary greatly.  One person could have few lesions and be very debilitated while the next person could have numerous lesions and not be affected much at all.  It all depends on where the lesions are located and how much damage they have caused.  When Penny was diagnosed, patients were advised not to do anything to add strain to their body.  As a result, patients affected by MS were told not to exercise, not to get overheated and that the best course of action was to sit and rest.

Although the months after her diagnosis were difficult for Penny, the diagnosis was also taking a toll on her family.  Jim recalls:  “I would get up and get ready to go to work in the morning.  Before I left I’d bring the baby to Penny so she could feed him.  I’d go to work and come home and do whatever had to be done – laundry, make supper, do the dishes.  I’d have the older two boys help with the dishes.   I’d do homework with them and then give everyone baths and tuck them into bed.  This went on for months.  One day on the way home from work I thought, ‘We can’t keep doing this.  I can’t keep doing this.’ ”

That night, when Jim got home, he did the unimaginable.  In addition to the love and care he had shown for his wife and family over this entire time he went a step further.  Jim dared to embark on something that was incredibly tough and something that he hoped would help the woman he loved so dearly.  He made her move!  Jim went into their bedroom and told Penny that she was getting out of bed.  They were going for a walk.  Penny told him that she couldn’t do it.  Jim wasn’t quitting on her that easy.  “That first day we got as far as the front step outside our front door.  We repeated that for several days.  Then one day we made it to the sidewalk and then the end of the driveway,” Jim recalls.  Eventually, they made it to the mailbox at the end of their property and then one day to the end of their street.  Jim took Penny on their daily stroll at least once a day and sometimes twice.  Many months later, Penny began to take walks on her own with neighbors going with her.

Penny and Jim at the Beach

“I remember one day I was walking with my neighbor, Bev, and it was about ten degrees out,” says Penny.  “We were about a mile from home and I told her I couldn’t walk anymore.  Bev grabbed me by the jacket and said, ‘What do you mean you can’t go?  You have to go!’”  All this activity was contrary to medical advice at the time, but Penny believes it is what saved her.  For the next 8-10 years the illness continued in a constant up and down cycle.  Penny went through a lot of physical therapy and steroid treatments.  She had many exacerbations and, for some reason, the Fall of the year always seemed to be worse.

Penny’s continued to experience vision problems and terrible dizziness.  Sometimes these symptoms would be so bad that she couldn’t even stand up.  Penny also experienced weakness in her arms and legs.  One time Penny had terrible burning around her waist and down her legs.  Eventually the burning changed to numbness and she couldn’t feel anything when she touched her legs.  Another time her doctor warned her that she could be experiencing irreversible damage to her optic nerve.  It was at times like these that Penny would reluctantly agree to take medication.  The MS drugs that exist today weren’t available yet and so typically that meant being treated with steroids.  All the while, Penny kept walking.

Not only is MS hard on the patient but it can be difficult and devastating for the family as well.  At one point Penny needed to wear a brace and use a cane on her walks.  She recalls her brother telling her he saw her walking one day with her brace and it really made him angry.  He pulled over down the road as he couldn’t control his tears. When Joshua (Penny’s youngest child.) was in a summer program for soccer Penny says she will never forget a heartbreaking incident.  At the end of the program Josh started running towards the car where she was waiting and then suddenly stopped, turned around and went back to the coaches.  Later, Penny asked him what he was doing and he said, “They told us to go get our parents so they could play with us.  I’m sorry Mom, but I knew you couldn’t do that.”  Penny recalls that moment with tears running down her cheeks.  “We had many times like that.  But that little boy understood it.  For all of us that was our normal.  I just wanted my children to have all the opportunities that other kids had and there were times when I felt like I couldn’t provide that for them.”

Once the kids were all in school, Penny decided to try and go back to work part time.  She believes this helped her psychologically.  “It made me feel like I was worth something again,” she explains.  Eventually, Penny went back to work full time at a local college.  “I didn’t know if I could work full time.  There were some days when I literally had to crawl up the stairs to my office.  But I saw this as an opportunity to help provide a college education for my children.  It was actually pretty amazing how it worked out.  My motivation was to get my children a college education but my husband was able to complete his degree as well.  I suddenly realized that this was something I wanted too!”  Penny’s motivation to get her children a college education eventually led her to fulfill her own dream of completing her degree as well.

Penny started an MS support group in her hometown of Dubuque.  She found that many patients needed some motivation and a reminder that MS wasn’t a life sentence of doom and gloom.  Many of the people that came to those first meetings were in wheelchairs and could hardly get across the room.  Penny told them if all they could do was get up and walk across the room then they should do it.  “Don’t do it just once a day, do it five times a day!  Don’t ever stop moving.  Do something – anything!” she told them.  It wasn’t always easy going to those meetings because, seeing others more disabled, was a constant reminder of what the future might hold for her.  Penny also found herself feeling guilty that she was fortunate enough to take those walks every day.  But the support group was something she was committed to in order to help others.

Penny still has struggles today.  Her balance is impaired but in spite of that she remains very active.  Penny trips and falls.  A lot!  There have been many bruises and broken bones over the years including a broken hip.  But, Penny always gets back up.  She refuses to let MS keep her down.  “Psychologically, you need to set goals for yourself.  To have motivation, determination and being driven can make a difference.  I think you just need to keep moving despite how you feel.  You can’t give up!”

Walk at Sunrise

Jim agrees.  “It can be hard on a marriage and a relationship.  I knew people who divorced after a diagnosis of MS but that wasn’t an option for me.  I couldn’t leave Penny sitting there and not help; not continue to love her.”  Penny adds, “We had four kids and we had to figure it out.  We had to figure out what worked for us.  I hope it made our kids better people, more understanding and compassionate for those that have problems.”

Penny says the motivating factor for her each day is, “When I get up, especially on days when I feel really, really bad.  I get up and I strap those braces on; those ugly braces.  And I hit the road because I don’t want ‘IT’ to have control.  I don’t want to have to say I can’t do it!  That time every day is my time.  It’s not IT’S time!  It’s all mine to talk, walk and gawk with God!”  Penny’s advice for others that find themselves living with MS is not to compare yourself to other patients.  Even though there are similarities, every case is unique.  “You can’t give up!  Keep on moving on!  My friend Charlotte, who has MS, gave me a bronze snail years ago.  I cherish it dearly.  She told me that, ‘the snail is slow, but it usually gets where it needs to go.’”

Jim can’t echo Penny’s sentiments enough.  “It affects more than the person suffering from the disease.  You need to step up to the plate and do what needs to be done.  Do whatever your partner is capable of and keep the interest and activity going.  For example, we never ever imagined we would be enjoying ballroom dancing at this point in our life but we wanted to learn how to do it for our daughter’s wedding.  I know Penny’s limitations and we adapt as we need to.”

In the end sometimes it is love and motivation that can help you overcome the struggles in life.  “Something Jim said to me many years after my diagnosis was, ‘If I had walked out in the beginning look at all that we would have missed.  All the amazing, incredible, irreplaceable things with you and our kids’,” Penny shares lovingly as she looks at Jim.  Yes, MS may have taken much from Penny but for her and her family much more was gained.


Be Great!  Be Strong! Be Determined!

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Living with MS – Courageous Risks – Jenn’s Story

Sometimes in life we just need to take risks.  Jenn Schmitt knew when she was diagnosed with Multiple Sclerosis at the age of 26 that there would be some risks she would have to take.  She would be glad to do so.  That was a tough time for Jenn.  While the rest of her family lived several hours away, Jenn was single and living in Des Moines, IA.  Jenn’s doctor, a well-known neurologist specializing in the treatment of MS, was extremely positive when delivering the diagnosis but cautioned her not to have children.  This was a difficult reality for Jenn to accept and it would play a large part in her choices when considering specific treatments.

Jenn’s symptoms began simple enough.  She noticed numbness in her hand but didn’t initially seek treatment.  When she finally did have it checked, it was believed to be nothing more than a pinched nerve.  After some time with no improvement, her sister, who is a doctor, suggested Jenn see a neurologist.  About the same time Jenn’s symptoms grew worse.  She couldn’t type and do her job anymore.  After a spinal tap and MRI test that showed she had lesions on her brain, Jenn was diagnosed with MS.

Prior to her diagnosis, Jenn’s only exposure to the disease was a high school classmate whose Dad had MS.  He was in a wheelchair.  That’s all she really knew about the illness and hoped that wouldn’t be her future.  She was scared.  Jenn’s doctor began treating her with the drug Solu Medrol.  It was administered through an IV so Jenn had a nurse come to her house daily for a week to give her the medication.  Complications from the spinal tap had left her with a severe headache that kept her in bed for several days.  “We discussed a spinal block to reduce the headache but I was afraid to have them do anything with my spine again.  Instead, I drank lots of caffeine,” she explains.  The headache began to taper off after about five days but fortunately Jenn noticed a difference in the MS symptoms after just three days of treatment.  It was like night and day.  When her symptoms had cleared she had discussions with her doctor about further treatment options.  Jenn was apprehensive about all of them.  She didn’t like shots and decided against those.  Jenn researched everything she could and decided the best option for her was to make some changes in her diet and remain active.

One of the reasons Jenn decided against drug treatments was because she knew she wanted children.  That was not advised if she was taking the recommended medication.  It was a risk she was willing to take in order to begin a family.  Three years after being diagnosed with MS that dream was realized when Jenn had her first daughter.  During the pregnancy Jenn felt fine.  “I felt like I didn’t even have MS,” she says.  That all changed after her daughter was born.  “In the fall after my daughter was born, I began to lose feeling in my legs,” Jenn said.  “When I went out of town for a meeting and had trouble walking three blocks to get back to my car, I knew I had to seek treatment.”

Jenn and Daughters

Jenn had another MRI performed and while there were no real changes, there were certainly physical symptoms.  Hesitant to go with Solu Medrol again, Jenn’s doctor agreed to start her on oral steroids.  That didn’t help and she was forced to try a small dose of Solu Medrol.  That seemed to help.

At one point Jenn did, in fact, try injections for treatment.  However, she really struggled with this. “I would sit in the bathroom filled with anxiety for an hour hesitating, not wanting to give myself the shot, before I could finally do it,” she explains.  Although Jenn did give herself injections for a short period of time, she decided to discontinue them.  Between the side effects and the terrible anxiety she struggled with daily, it wasn’t worth it to her so Jenn stopped.

The decision was well worth it when, two years later, Jenn was fortunate enough to have a second daughter.  During this time, she worked from home so it was easy for her to manage her symptoms and combat the disease.   For the most part, if Jenn had any issues it was easy for her to rest and get better.  For the next 11 years Jenn experienced no major flare ups.  She did experience increased numbness in different parts of her body but those were controlled with steroids when necessary.

Many MS patients have issues with extreme temperatures.  Jenn is no different.  She notices the symptoms more when she goes from being warm to cold during the winter.  She seems to struggle more when her body temperature changes very quickly.  In addition, Jenn almost always has some numbness in her hands and she notices that she gets worn down fairly easy.

For many years, Jenn lived in silence about her MS.  She wouldn’t tell anyone she had it.  That has changed and Jenn wishes more people understood what MS was and how it affects those that have it.   She believes increased awareness makes a huge difference.  “Once I decided that MS was a part of who I am and I wasn’t going to keep it to myself anymore it was amazing to realize how many people I encounter every day that are in some way affected by it.”  Years after she had her second daughter, Jenn shared with a coworker that she had MS.  Her coworker was shocked to learn this because she had a sister that had it and used a wheel chair.  Her coworker just couldn’t believe how well Jenn was doing in spite of the disease.  Experiences like these have left Jenn feeling uncomfortable about how well she is doing.  “I hear other people’s stories and I feel bad.  People can look at me and not know I have MS.  I feel guilty about that sometimes.  Why am I so fortunate?”  There were days when Jenn questioned her diagnosis because she felt so good.  At one point she even got a second opinion.

Jenn Sisters and Dad

It is understandable why Jenn had those questions.  She has done so well that until this past fall, when Jenn had her first major attack in 11 years, her own daughters really didn’t understand how MS affected her.  While Jenn could tell she always had an issue with her balance, her daughters could not.  It was their first real exposure to witnessing their Mom struggling and having to undergo treatments for MS.  This most recent attack began with a cold sensation in her left leg and within a few weeks her leg felt numb.  If she sat too long it would become painful and she noticed a lot of back pain.  This time she also realized it was affecting her vision.  Again, a MRI showed no major changes or progression, but Jenn’s doctor wanted to start her on a medication specifically for MS.   Jenn resisted because, again, she didn’t care for the side effects.  Fortunately, she was able to manage the flare up through a small dose of steroids and rest.  Thankfully, once she began the treatment, her vision became brighter and crisper and the numbness in her leg improved.

Jenn believes it is very important to lean on your friends and family.  “At one point, in the beginning, I didn’t think I needed any help and could do it all on my own,” she says.  “I lost my Mom when I was five and so all I had at the time were my Dad, sisters and a very caring man that I was dating who would later become my husband.  I think they took my diagnosis harder than I did.  My sisters lived in the Twin Cities and one of my sisters came down for all my appointments.”  Jenn’s future husband also made coping with the diagnosis easier because it did not scare him.  “He was very supportive then and even though we are now divorced he is still supportive and has been there when I needed him,” she says.

Jenn’s attitude regarding her diagnosis was that she would figure out what her new normal was and make the best of it.  She tries to maintain that positive attitude every day.  However, it’s not always easy.  “This past fall when I had my flare up, I had just bought a house.  I try not to do “what ifs,” but this last time I really struggled,” she admits.  Jenn had stress in her life before including two pregnancies, building a house, loss of family members, and a divorce from a very supportive husband.  Through all of this she never had any major flare ups so she feels fortunate.  “I have had worse things than MS happen to me in my life, but I have a very supportive family.  I take it day by day.  You don’t often run into people that have MS that are as fortunate as me so I count my blessings.”

Jenn Family

Jenn’s faith in God has played a big role in maintaining her positive attitude.  “Since my ex-husband and I did not grow up in Dubuque we struggled finding a place to worship God and grow in our faith.  Fortunately, I found Hope Church in Dubuque.  I strongly believe my faith is what helps keep me strong and positive,” she says.  Jenn believes daily prayer and following God makes a huge difference when facing any adversity in life.

One thing Jenn can’t stress enough is how important it is to become knowledgeable about and understand your body.  “It’s important to understand when you need your rest or that you have to change what you are doing,” she explains.  “Don’t be afraid or too prideful to ask for help.”  Even when her ex-husband asked what he could do during her recent flare up, Jenn accepted his help.

There are certainly many challenges with MS, but Jenn has the mentality that she isn’t going to let it beat her.  After the births of her daughters, she had gained weight and in 2010 lost about 45 pounds.  “I knew I needed to strengthen my muscles and keep fit.  I wanted to be able to successfully minimize the effects of MS without the treatment of medications,” she explains.  Jenn started hiking and finds she really enjoys it.  She also began doing hot yoga, something that most MS patients would have difficulty with given their sensitivity to heat.  “I’ll try anything and if I find it’s affecting me I just back off.  I’m not afraid to walk out of a yoga class if I’m having difficulty handling the heat.”  Jenn hasn’t done hot yoga for a few months but has been working out with her friend, Jamie Kemp, at Planet Fitness regularly.  Through the help of Jamie she is building muscle that is making a difference.

Jenn believes her positive attitude helps tremendously in preventing MS from holding her back in all that she wants in life.  That doesn’t mean it’s always easy or she doesn’t have fears.  Does she have a fear that someday she could wake up and not be able to get out of bed?  Absolutely.  Jenn’s biggest fear is that of losing her vision. “That above anything else would be difficult,” she says.  However, Jenn also realizes that she is fortunate.  If there is one thing she wants others who are living with MS or are newly diagnosed to know it is that, “You can live a full and meaningful life in spite of MS.”  Jenn’s attitude, her approach to life, and fearless courage to try new things is certainly an example for others to follow.


Be Great!  Be Strong! Be Determined!

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