When Jim, a hard-working professional, husband and father from Maryland, was diagnosed with MS in 2010, his first question was, “How will this change who I am?” While he’s had to adjust in some ways, Jim is learning to better manage his time and physical capabilities in order to spend more valuable time with his family – his wife of 16 years and their three children.
Family toolkit (the tools used by Jim and more)
Time with my family - May 2012
When I was diagnosed with MS at age 36, in 2010, the first thing I focused on was, “How will this change who I am, both now and in years to come?” For the first time in my life I was fighting something I could not see, and something I did not know how to approach. I felt lost. All I knew to do was what I had always done, and not panic. After a few weeks I began to come to grips with the fact that I did in fact have MS, and from here on life would be different. I had to gain control of my emotions or I would be consumed with anger, fear and frustration.
I could not allow MS to dictate who I was as a person. I had to realize that MS could not take away the things I was proud of and what I had achieved in life.
Being diagnosed with MS has forced me to redefine parts of my life: How I react to certain conditions, how I approach daily activities, how I respond to my surroundings, and how I manage my interactions with others. But I now meet whatever may come with a positive, realistic outlook. I can still have an impact on others in a productive way. I can only strive to be the best husband, father, brother, friend, co-worker – person – that I can be.
My goal is to learn to manage my life around my physical limitations. I have a wife of 16 years and three children, ages 15, 13 and 9. I have always worked very hard in my professional career, and despite MS, I have not slowed down much. Work is, in some ways, my therapy. But when I am home in the evenings and on weekends, a lot of times I am simply exhausted. I need help with learning to better manage my time and physical capabilities in order to spend the needed time with my family. I struggle with finding balance between too much and too little. I owe it to myself and to those around me to give myself the best chance possible at leading a happy, fulfilled, productive life.
I also want to share my story and show others that life does not end after being diagnosed with MS; it merely changes one’s life and begins a new chapter.
I am limited by ME, not MS – July 2012
Today begins a new chapter of the rest of my life. Not because I am simply taking part in Everyday Matters, but because I have made the choice to make changes my life. These are changes that I have talked about, and thought about for a long time. Talking and thinking about something is very different from taking action to change. Driving home last night my wife asked me, “Why Now?” This question begs an answer. Change is something that we can plan, talk about, and even believe is a necessity. Yet, we will not begin to make changes until we decide for ourselves that it is time. The answer is very simply; I am now ready.
As a child, there were so many things in my life that I did not have control of, things that were on someone else’s terms. I could not control where I lived, the school I went to each time we moved, and in turn even who my friends were. I could not control the decisions that my parents made and the effect that those decisions would have on me. Almost unconsciously, I grasped the things I could control. This formed a habit for me and how I was going to conduct my life.
Fatherhood is something that I have never felt in full control of. Growing up, I did not have a solid day to day example of a father/child relationship. As I had children of my own, I did not know how to manage these relationships. I would retreat to the things I knew I could control, such as work. If I went home at a normal time, I would be completely out of my element and hence out of control; I wouldn’t know what to do with these little people. My wife was doing a great job of caring for them, what did they need me for? This is not to say that I never saw nor spent time with my family, I saw them almost every day, and we have always done everything together. I have always been here physically, but most of the time I have struggled with making the day to day emotional investment in my relationships with my kids. When I was home I was always working in the shop, on the computer, or helping friends with their projects. I filled my life with things I knew how to control. In the back of my mind I craved to be a bigger part of their day to day lives, but I didn’t know how to give them what they needed or what I needed. “Besides,” I would think to myself, “they are just children; I have plenty of time to figure it out…Right?”
I woke up one morning and realized that that I had a teenager and two more right behind him. Time was running out. I realized that I was losing time and if I didn’t get this figured out I was going to lose out on having meaningful relationships with them. I was failing in teaching my boys how to be a father, and I was giving a poor example to my daughter of how the father of her children should one day be. I was leaving them with no example, and to one day figure it out on their own with their children.
Just when I come to the conclusion that I must atone for this and make the necessary corrections, I was diagnosed with multiple sclerosis. I was now faced with a whole new set of circumstances that I could not control. So I did what I had always done and focused on the things I could control. I have always been a positive person. I have always found the strength and the will to push through the fatigue and adversity. However the problem with MS is that I am sometimes so tired and worn out, there is little to no time left for day to day life and relationships with my children. At first, I blamed MS for stealing my time from them, Instead of making the adjustments I needed to in order to achieve my goals of having stronger relationships with my kids, and providing a better example to them.
My focus in this endeavor is Family. Not because I have the perfect family or am the perfect father, rather because my family means so incredibly much to me. I must learn to make the changes in my life that will allow me to achieve the goals I set out to achieve regarding my family and the time I spend with them. I must change who I am and find balance between what I can control and what I cannot. MS forces me to have certain limitations. I cannot change that. However, I can change how I function within those limitations. I must be willing to change my habits in order to find the time that my children need with me, and that I need with them.
I have also learned that this is not an all or nothing endeavor. In the book, The Happiness Advantage, Shawn Achor talks about the “Zorro Circle.” I have adopted this principal and will use it in my approach to achieving my goals. I cannot successfully implement wholesale changes in my life and be a different person. I must approach it in small, manageable steps. So my first step is going to be spending a minimum of 15 minutes a day with each of my kids and wife. An hour a day! If I am feeling good, maybe this means going for a walk with them. If it is a rough day, it might mean walking through the yard and looking at my older son’s blueberries, raspberries, and sunflowers, or scrambling the Rubik’s cube for my younger son over and over again and watching him solve it, or helping my daughter select fabric for the stuffed animals she sews.
MS is not who I am, it is simply a characteristic of me. I have realized that I am limited by ME, not MS. I can choose to make the decisions, and take the actions necessary to achieve my goals and my happiness. And so my voyage now begins. Today is the first day of the rest of my life.
Success and tough choices – August 2012
It has now been a full week since I set a personal goal of prioritizing my time to be more focused on my family. I have been able to keep on track with my efforts and it has proven to be very fruitful. Two of my children have even made unsolicited comments. My daughter said to me, “Dad, the time we have been spending together has been really nice.” My older son said, “Thank you, Dad. I have really enjoyed the attention you have focused toward us. I have noticed that we are spending more time together, and I like it.” Some nights we have played board games, or just sat together and talked about our days. There have been other nights that I have focused my attention on them each individually in small ways. Another of the principals Shawn Achor talks about is the “Fulcrum and the Lever.” All I have really done is shift the fulcrum to a different point and change how I spend time with them. This has produced benefits beyond just our enjoyment of the time spent. Even though I have been exhausted this last week, my mood has been lighter, and it seems I have not had to work nearly as hard to maintain my energy level. I have also realized that my children enjoy my tired attention just as much as any other.
This week I also made one of the toughest decisions that I have been faced with in a long time. A few months back I was asked if I would join the faculty and teach at a local Community College. I have a passion for teaching, encouraging, and empowering others. I saw this as a perfect opportunity and was honored that they would seek me out. Of course I accepted without hesitation. The position is set to begin in the fall semester 2013, and I was asked to teach four classes; one in the afternoon and one in the evening, two days a week. My employer is extremely supportive and understanding. Even though it would be cutting into part of my regular workday, they were completely on board with me taking on this additional workload. They understood how much this opportunity meant to me. Since accepting this position I have been excited about all that it meant. However, I have also had an uneasy feeling in the back of my mind.
Pre MS, I wouldn’t have thought twice about it. It meant that I would be home by 10:30 at night, two nights a week. But this is not pre MS, and this is in fact a potential problem that raises red flags. I finally faced the reality this last week of just how much energy this endeavor would require, and just how much quality time it would take away from not only my family, but from everything in my life. It isn’t the fact that I would be getting home later. It isn’t necessarily the actual time that I would be spending at the college. In the grand scheme of things, it isn’t that much time. It is about the recovery time that I would need from exhausting the energy and focus on a teaching roll such as this. It is about staying healthy and controlling what I can to keep myself from being completely exhausted. So, I informed the College that I would have to withdraw my acceptance. They were disappointed, but they completely understood and were grateful that I left them with enough time to fill the position as necessary. This decision hurt to make. As much as it hurt, however, I feel a sense of relief that I have made the right choice.
It is extremely important to keep things in perspective. There is little comparison between my abilities now to my abilities before MS. I have always maximized my efforts based on my limitations. Before MS, I seemed to almost not have limitations. I did not work non-stop simply because of a sense of pride, or because I was being macho. I truly just seemed to be able to do everything and not get tired. I would work any number of hours in a week and only sleep 4-5 hours each night; I was maximizing my efforts based on my abilities. When I gave 100%, it was a true 100% effort of what I was capable of.
Those energy levels are now gone, and I physically do not have the ability to work as I used to if I am to maintain my health and wellbeing. I am being unfair to myself if I compare my current efforts with my former abilities. A critical lesson I have learned is that you are still giving a 100% effort even though you might not be doing all that used to do. I must compare my efforts with what I am capable of now, not with what I was capable of then. Realizing this has given me a greater sense of self worth, and in turn made me that much happier. In order for me to keep my new habits of spending quality time with my family, these are the tough choices I must make.
Difficult lessons learned – September 2012
So, here I am now several weeks into the Everyday Matters project and I’m really excited about where we are and what we’ve accomplished. I’m also finding that I have much more than I thought to learn in order to change and grow into the person that I want to be.
I entered into this program thinking that I simply needed help understanding how to better manage my time because of my fatigue and physical limitations due to MS. I’m not realizing that there were deeper issues that needed to be addressed. I know now my problem wasn’t specifically time management or taking control of how I spend my time. I think the deeper issue was accountability – specifically me holding myself accountable to my family and being accountable for the decisions I make that affect my family.
I think we all have a greater sense of self-awareness than we realize or even sometimes are willing to acknowledge. It can be frightening to acknowledge the things we know about ourselves because once we acknowledge those things, in one way or another we are accountable for them. I’ve known for a long time that I’ve needed to make some personal changes in my life, specifically regarding the father that I am to my children and the husband I am to my wife.
When I was first diagnosed with MS, I was so scared of what it might mean for me. I was scared of the unknown, really. And I was scared it would take away my ability to be the person I wanted to be. I was scared it would take away my ability to make the changes I wanted to make. I fought MS by shifting my focus further toward the things that took time away from my family.
One of the things Shawn Achor talks about in his book The Happiness Advantage is post-traumatic growth. For me the most recent traumatic experience was being diagnosed with MS. Sometimes it takes courage to experience the growth part of post-traumatic growth. It can be very easy to use that traumatic experience as an excuse for not making changes, but I think the actions we take and the changes we make in order to grow are so much more rewarding than apathy, and doing nothing. And just accepting the diagnosis and feeling like we’re just accepting that we can’t make changes anymore. MS is really an insidious disease. It not only attacks your physical being; if you let it, it can also bury itself so deep into your psyche. I think I have allowed myself to fall victim to this, and almost unintentionally, I let MS be the reason for not cultivating the relationships with my family the way that I know I need to.
I can’t control the physical affect MS has on me, but I’m really learning that I can control the emotional and mental effects it has on me. I’m excited about where we’re going with this project, and I’m excited about my future and the goals that I am achieving and the things that I’m accomplishing. And I’m excited about where we are.
Choosing happiness – October 2012
Wow, it is hard to believe how many weeks and months have now passed since beginning Everyday Matters. It seems like just a couple of weeks ago I was being told that I was selected and going to Denver for the kick-off. So much has taken place and changed between then and now. I started with the broad goal of spending time with, and strengthening the relationships between my family and me. The lessons I have learned and the tools I have been armed with have led me to realize and accomplish that goal and so much more.
One of the biggest lessons I have learned is that being positive and being happy are not synonymous; nor are they mutually exclusive. In fact having a positive mindset can be an important part of achieving happiness. I am a positive person; I have always been a positive person. But that does not mean that I have always been happy. I applied to be a part of the Everyday Matters project because I had things that I knew I wanted to change and I felt that I needed help changing them; things I was unhappy with. I believed that being a better husband and father would bring happiness to myself, and my family. And guess what, I was right. I am by far happier now than I was before I began spending so much meaningful time with my family. My wife and kids are noticeably happier and more relaxed around me. I knew that the social investment I needed to make in my relationships with my wife and children was necessary for both our immediate happiness, and for our future happiness. I am also excited that I am setting an example for them that will affect their relationships with their families one day.
Shawn Achor talks about happiness being a choice, and he is right. There is, however, also a resulting effort, and action must take place once the choice is made. Otherwise it is an idle desire. Being happy is more of a series of choices. The phrase, “happiness is a choice” is not meant in a singular sense. You cannot simply say, “I choose to be happy” and suddenly be happy. It means that your happiness is derived from the choices you make. It means that you have control of the influencing negatives and positives in your life. I knew that being a better father and husband would bring greater happiness to my family and me. This did not happen until I made the choices and performed the necessary actions everyday required to achieve this goal. With each successive choice, there is yet another resulting action and another choice. And on it goes. I get to choose what makes me happy.
There is no question; MS does physically inhibit certain parts of my life. But MS is not a reason, and cannot be an excuse, for me to not achieve realistic goals.
Fatherhood and MS – November 2012
It is hard to imagine that the Everyday Matters program began only four months ago; I have learned so much in such a short time. I have discovered things about my character and myself that have changed who I am as a person, and how I view and experience the world around me. Unequivocally, I am now a better father, husband, friend, and person than I was when this program began. I am not only happier, I have a better, and healthier understanding of what it means to be happy; not simply how it feels to be happy.
There are a multitude of lessons I have learned; too many to list and give the proper attention to in this journal entry. It seems the momentum I have gathered with what I have done reveals new lessons and discoveries about myself everyday. Most of these discoveries were made in areas that I didn’t realize needed to be explored. When I began the Everyday Matters program, I knew there were things I needed to change about myself, and I set a simple goal of being a better father. This was not the first time I had thought about this goal. However, in the past I would tell myself that everyday life with MS was another impediment keeping me from accomplishing this goal. I needed to figure out how to work around this mindset. I also needed to define what "better" meant. I really wasn't sure, but I knew I wasn't living up to the standard of a great dad. I knew I needed help for both understanding, and execution.
What I discovered was that the seven Principles of Positive Psychology that Shawn Achor had laid out in his book, "The Happiness Advantage," were the tools necessary to achieve my goal. I was able to utilize every one of the seven principles, and they had a significant impact on my life. Sometimes I would even find myself practicing some of the principles unintentionally. Michelle Clos and Kristen Adams helped me figure out what it was I needed to change, and what I needed to do to change it. Sometimes just having someone to talk to, and sort though your thoughts can open up a world of self-discovery. I needed to be open, though, to making these discoveries, and understand why I had failed at making changes in the past.
Even before MS, I didn’t truly know how to be a father or what that meant. Instead of facing this unknown, I would retreat from my family to the things I knew how to do; the things I was good at. In the back of my mind I justified that it was okay, or at least understood... maybe even noble for me to put so many hours into my career, work in my shop, work on the house or in the yard; do all of the things that “MEN” were supposed to do for their family. These were things that would keep me from spending significant time with - and cultivating meaningful relationships with - my children. I knew that one day I would need to face the emotional and psychological responsibilities of being a father… a good father, or I would miss out on what that meant. My kids, too, would miss out on what that meant for them if I did not make some changes.
When I was diagnosed with MS, I unknowingly, almost instinctively, approached it in the same way I approached fatherhood; I chose to fight MS by retreating... by evading. I had unknowingly been training myself for this fight for years. I was blind to the fact that while I was doing all I thought I could do to “fight” MS, I was continuing to ignore my family. I was making it even more difficult to be a better father. To me, MS became another reason for not devoting the time and attention to my children I needed to. I was now faced with two significant challenges: fighting MS, and being a better father, and I used one as a reason for failing at the other. I thought that by fighting MS with the weapons of perseverance and stubbornness, I could defeat it. I thought that by simply being a good provider, I could get away with not building meaningful relationships with my kids. The reality was that I wasn’t addressing either; I was simply ignoring them both with passion.
I cannot change the fact that I have MS, no more than I can, or want to, change the fact that I am a father. What I can change is myself, and how I approach the challenges I am faced with. I have learned to approach spending time with my family without trepidation and fear. I have also learned that sometimes I need to work within the limitations of the fatigue and the physical attacks of MS. I need to rest and sometimes do less, or do things at a slower pace. This doesn't mean that I am giving in to MS, it means that I am controlling how it affects me. Before, I was spending all of my energy on the things that were stopping me from being successful at both fatherhood and living with MS. Now, I have learned that I need to conserve some of my energy for the actions necessary to be a better father with MS.
MS and fatherhood are both a part of my life... they are a part of who I am. I wouldn't have chosen to have MS, I also would not change what I have gained from having MS.