Monthly Archives: May 2016

Winning

Please take three minutes to watch this VIDEO before reading today’s blog!

Years ago, while I was still working, my principal showed us this video at a faculty meeting. Even though the context in which it was presented escapes me, the power of this video never has. The message is clear, and it can be applied to anything at all. 

The reason I’ve been thinking about this is because lately I haven’t quite been myself. Physically I have been feeling off, which immediately affects my mental state. As if the MS (and the many joys it brings me in the way of obnoxious symptoms) isn’t enough, this allergy season is a brutal one for me. I end up in an endless cycle where coughing causes back spasms, disrupting my already troubled sleep patterns. This then causes me more pain, because less sleep/rest causes my pain to intensify. Spending days on the couch “resting” makes me feel like I’m being lazy, or that I should be doing other things. I know my body needs the rest and I allow it, but it doesn’t do much for the psyche. Even the girl with the perpetually half full glass of lemonade has her moments. As much as I am that girl, I do allow myself the occasional short-lived pity party

The thing is, everyone feels down in the dumps every once in a while. If you don’t, then I admire you, and I’d love to know what your secret is. It’s human nature to  experience all emotions, including sadness. If you don’t experience sadness every once in a while, the happy times wouldn’t be nearly as sweet. What I do know for sure is that the longer you wallow in your self-pity, the more you retreat from everything and everyone in your life. Once that happens, even the smallest of tasks seems impossible, then stress sets in, and all of a sudden you feel utterly overwhelmed. This is yet another endless cycle unless you are strong enough to pick yourself up. 

When I was still teaching, I never gave less than 110%, up until my (unexpected) last day of work. I was awarded "Teacher of the Year" just 2 years before MS ended my career.

When I was still teaching, I never gave less than 110%, up until my (unexpected) last day of work. I was awarded “Teacher of the Year” just 2 years before MS ended my career.

The girl in the video fell due to something outside of her control. Another runner “clipped” her heel, causing her to fall. As I see it, she had two options: lie there on the ground sulking in the fate handed to her, or else pick herself up and do something about it. Isn’t this how we should look at life? Once you pick yourself up from a fall, amazing things can happen. 

No matter what is happening in my life, I do my best to keep smiling. It's not always easy, but it always makes me feel better.

No matter what is happening in my life, I do my best to keep smiling. It’s not always easy, but it always makes me feel better.

In my life with MS now, the running part is just a metaphor. When I fall down (physically OR metaphorically), I know for sure that nothing good can come from it. But when I pick myself up, nothing bad can come from it. There is no such thing as failure when you’re trying your hardest, and you simply can’t compare yourself or your abilities to anyone else. You can’t judge yourself by comparing your own capabilities (or disabilities) to other people or you will never find peace with your station in life. 

Again, I am not saying that you don’t deserve the occasional pity party. But the quicker it’s over, the better your mental state will be, and as we know, stress and negativity will certainly affect MS symptoms. With MS, so many things are outside of your control, why not do your best to take advantage of what you can control? Ultimately, the choice is yours. Are you going to lie down and lose the race? Or are you going to get up and do what you can? You might not win… but then again, you might! 

I didn't win the race, but I gave it everything I had. I ran this 5K on my 9 year diagnosiversary in 2012. Things have changed for me, and I can't run anymore, but I still give my all to everything that I am still able to do.

I didn’t win the race, but I gave it everything I had. I ran this 5K on my 9 year diagnosiversary in 2012. Things have changed for me, and I can’t run anymore, but I still give my all to everything that I am still able to do.

Silver & Gold

After Bruce’s entry last week, we both thought it would be an interesting idea for me to respond in my own way to his brutally honest account of the events that have shaped our life together. It’s amazing how two people can live through the same exact events, yet our perspectives are completely different. It’s that difference that makes us who we are, and it’s just one of the many reasons why we complement each other so well.  

I know that Bru has been rehashing moments from his past during the last several months, but I wish he wouldn’t. Those days are long behind us, and I’d rather look to our future at where we are headed, rather than back from where we came. What I know for sure is that he takes his role as my care partner very seriously and for that I could not be more grateful, because from the moment that title was bestowed upon him, he became an even better Bruce than he already was.  

This is one of my favorite pictures of Bruce and it was taken just 3 months after he assumed the title of "care partner".

This is one of my favorite pictures of Bruce and it was taken just 3 months after he assumed the title of “care partner”.

Back in the early days of our relationship, I was working a retail management job, and doing quite well at it. But it was physically taxing on my body (which hindsight tells me was already battling Multiple Sclerosis), due to the physical demands of the job, which included carrying 50 pound boxes on my back, up and down ladders, unloading trucks, and running all over the store as the only manager on duty. In addition, the schedule was never the same week to week, requiring me to work nights, weekends, and even holidays. I’ll never forget the year (in the pre-cell phone era) when I had to work Christmas Eve and Christmas Day. I went out to the bar after work on Christmas Eve because I didn’t want to go home to my lonely apartment, and Bruce was frantically trying to find me. Not being able to enjoy the holidays and weekends with my guy was the hardest part of living the retail life. 

Living the retail life on no sleep, long hours, lots of coffee and too many cigarettes.

Living the retail life on no sleep, long hours, lots of coffee and too many cigarettes.

Because of that, when I had the chance to change careers, I jumped at the opportunity. Painstakingly, I took a very large pay cut in exchange for a “real” job. Retail sucks, but financially, I did quite well as a manager, earning well more than Bruce was at his job. I couldn’t imagine being able to live that life forever though, so together we decided to suck it up and make it work. The job wasn’t really much, but I “graduated” at the top of my training “class”, and before long, I began training new employees. A year later, I left for an even better “real” job, and the same exact thing happened. I “graduated” at the top of my training “class”, and again, soon after was training new employees. Obviously I was already a teacher, but I didn’t teach in a traditional classroom. 

My 29th birthday. Before I knew I had MS.

My 29th birthday. Before I knew I had MS.

While Bruce worked his job, I finally wound up in the career I was meant for. As a child I always thought I’d be a teacher, but studying abroad in Spain for my entire junior year had left me in a position where there was no way I would be able to finish the required course work unless I had an extra two years to be an undergrad. With a tweak to my major, I graduated on the four and a half year plan. Even if I wanted to be a teacher at that point, the job market was so bad that even schools were not hiring, so I was lucky that I had a number of years with that solid company who took me on as a retail manager. But years (and probably three careers) later, a friend who was a teacher in Bergen County (where I grew up) called out of the blue to ask me if I wanted to be a teacher. The high school in her district was desperately trying to find a replacement for a Spanish teacher who up and left suddenly, without giving proper notice. I didn’t hesitate despite the 65 mile commute that I had to endure. At the time I didn’t realize it because I took my fair share of abuse from the kids (as they had been without a proper teacher for many weeks), but it was the best decision I ever made. 

I threw myself into my career. Finally I was passionate about something, and good at it. Although I was good at my past jobs, passion was always missing and I knew I wanted more than just a job. Meanwhile, Bru contentedly worked his job, happy to go home at the end of the day and not have to think about work at all. He was good at his jobs, but ambition was never his strong suit. He did what he had to do, no more, no less. But he supported my decision to be a teacher despite the endless hours I spent working at home on nights and weekends, always with the promise that it would get easier the longer I was teaching. In a matter of months, I changed careers, we got married, and bought a house. Things were crazy, money was extremely tight (due to my salary literally being slashed in half to become a teacher), and we regularly went food shopping in my mother-in-law’s pantry (Thanks, Mama B!). 

This was how I spent my nights and weekends as a teacher: grading and lesson planning. Constantly working, with an occasional break with a dog or two on my lap.

This was how I spent my nights and weekends as a teacher: grading and lesson planning. Constantly working, with an occasional break with a dog or two on my lap.

Finally things got slightly easier for us when I signed a contract to teach in my dream school. In the fall of 2002, we finally caught a break, as I began teaching at Freehold BORO High School, with a pay increase from my last school, and a work environment that truly felt like home to me. Finally some of the pressure was lifted off of us and our marriage, and then I started having some weird symptoms that could not be explained away as something “normal”. This was, by far, the most frustrating thing that could happen because I was feeling pretty defeated. Here we had just started to feel a sense of stability and now I (well both of us really) had more crap to deal with. Plus I had so many doctor appointments and tests scheduled that I was forced to my use sick days, which was frowned upon, especially during the first year in a new district. Sick days are meant to be taken when needed, but the union reps made it very clear that they should be used sparingly, if at all, if you wanted to be rehired at the end of the year. Fortunately for me, my principal was understanding of my situation, as she was battling breast cancer at the time, plus every single absence was documented with a legitimate doctor’s note. 

Teacherly duties: signing yearbooks at the end of the year!

Teacherly duties: signing yearbooks at the end of the year!

It was during this time period that I leaned so heavily on Bruce. He was my co-pilot as we navigated through the web of doctor appointments, medical testing, and health insurance while dealing with the absolute terror of the unknown. If I ever doubted his devotion to me in the past (which I didn’t), I certainly couldn’t at that time. 

As we entered uncharted territory for us, we were drawn closer together rather than being pushed apart by the uncertainty of it all. I wish that everyone going through the grueling process that being diagnosed with MS tends to be could have a care partner as amazing as mine has always been. He has never shirked away from our new reality, and he loves me despite the issues that MS has brought into our marriage. I have never had to question whether he’d still be by my side because he makes sure I know the answer. His support is unwavering, which alleviates stress on me, thus helping me feel my best since we all know how stress affects symptoms of MS. 

The moral of my story is simply that having Bruce by my side makes me exponentially stronger than I could ever be without him. I’m not talking about physical strength, although he acknowledges how hard I work to stay strong physically. But beyond that he gives me the strength to face each day (and our future), knowing that he will always have my back. 

Taken during a night out with friends.

Taken during a night out with friends.

Nowadays, when we look back on our past, we realize that there were things we took for granted back then, which is why we now take advantage of every single moment that we have together, whether good or bad. When we were younger, we never gave thought to the fact that time is fleeting. No one really does. But now in our mid 40’s we are much more aware of how quickly time passes and that precious moments are often wasted. 

Our wealth is not determined by the size of our bank account, but rather by the quality of time we spend with the people we love most. 

(Right after Bru and I got married, the song “Silver & Gold”, by Neil Young was released, and I associate it with our life every single time I hear it.) 

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Real Life

“Life is what happens to you while you’re busy making other plans.” – John Lennon

The quote above is a line from the John Lennon song “Beautiful Boy”, and while I’ve probably listened to the song a few hundred times, on a recent occasion that line hit me in a way that it never had before. I mean I always knew it was there, and I made a note of it and what it meant, but this time it was different. This time it really made me think about Ren’s MS, and how it has affected our lives…in both good and bad ways. The recognition of this song lyric as something more than just that, comes at a time in my life where I’ve been recollecting and reminiscing a lot about exactly how things turned out the way they have for me. I’ve been rehashing moments from my past over and over again for several months now, trying to figure out how I’ve arrived at the place where I currently am in my life. The reasons for the nostalgic period I find myself in are many, but hinge primarily on the worsening of Ren’s condition over the last five months or so, and how it has made me fear for her future. It has been an alternatingly exhilarating and frustrating exercise where I sometimes find myself reveling in my past exploits, and other times greatly regretting the way certain things played out. But the one thing that is abundantly clear to me is how important Ren’s MS diagnosis in June of 2003 was in making me the person that I am today.

This picture was taken when Ren was first having symptoms. She was in so much pain, and there were not yet any answers.

This picture was taken when Ren was first having symptoms. She was in so much pain, and there were not yet any answers.

Prior to the appearance of the first of Ren’s MS symptoms in the Spring of 2003 (that were noticeable enough to not be explained away as something else…since upon further review, Ren had been dealing with the disease for some time), things were very different for us…and not just because we were 13 years younger. Ren was just a few years into her teaching career, and in her first year teaching Spanish at Freehold Boro High School, while I was in pretty much a dead-end job at a failing company that was only about a year from declaring bankruptcy. Neither of us was making a whole lot of money, and while Ren had finally found a career she was passionate about, I was just floating along still trying to figure out what I wanted to be when I grew up. As I always had been, I was well respected, responsible and very good at my job, but didn’t much care what I did or where I worked. I just didn’t have much motivation to better myself or my career. Work was just a necessity, and as long as I was employed and getting a paycheck I felt like I was doing what I was supposed to be doing. To be honest, I was still just wishing that I was back in college, with little responsibility and plenty of time for partying. I did not enjoy being a “grown up” at all, and the anxiety that adult responsibilities brought with them made me a pretty miserable person to be around most of the time. But when the months of doctor appointments finally culminated in Ren’s MS diagnosis on June 2nd, 2003, a switch seemed to go off inside of me. I almost instantaneously knew that it was time for me to grow up. This was not a conscious thing, or calculated in any way, but there simply was no other choice. And I was completely fine with that, because Rennie now absolutely needed me to be the best possible husband I could be…on all levels. At the age of 31, I’d finally found my motivation.

This picture was taken just 11 days after diagnosis.

This picture was taken just 11 days after diagnosis. The Devils’ Stanley Cup run that year helped keep our minds off of what we were dealing with.

I knew I had to better my career situation, but I needed to figure out how. I was working in an IT department as a Crystal Reports developer, but this was a very limited skill set, and from what I was seeing out on the job websites they were not skills that were in high demand. The initial answer was to move into teaching. Rennie had entered education as a 2nd (or 3rd or 4th) career by utilizing New Jersey’s Alternate Route program that allowed professionals without educational degrees to still become teachers by passing the Praxis exam, finding a school that would hire you as an Alternate Route teacher, and then attending and passing Alternate Route classes given by the state that were intended to make you into a “real teacher.” This sounded ideal, as at the time teaching was still a stable and secure profession in NJ, and with Ren showing me the ropes I’d have someone at home who could navigate me through the finer points of being a teacher. We determined that I had enough college credits to become a Social Studies teacher (which was perfect, because that was always my favorite subject when I was in school), and I signed up for the Praxis exam. I then did something that the Bruce of just a year before would never have done in a million years…I studied my ass off for that exam. Every night and weekend for 3 months, I read through the Praxis Social Studies study guide and took enough notes to fill up two three subject notebooks. The hard work paid off, as I aced it on the first try. Now to find a teaching job…but, as luck would have it I wouldn’t have to.

I’d had my resume up on all the job sites for months, hoping to find something that would get me out of the bad situation I was currently in. The company I was working for was at a point where they had scheduled monthly layoffs, and as my department shrank my chances of hanging on for much longer were getting worse. Out of nowhere, a position at a growing biotech company appeared that was an absolute perfect fit for my skills and experience. And it would include a huge pay increase from what I was making at “Titanic, Inc.” There really was no choice other than to take this job, and table the teaching idea for the time being. Everything about it was going to make our life easier, from the commute to the salary, and I could always revisit education if all else failed. But that never happened…it didn’t have to.

Because of how much money Ren and her MS Walk team raised, we attended the Tour of Champions, hosted by the MS Society, in Orlando, Florida.

Because of how much money Ren and her MS Walk team raised, in February of 2009 we attended the Tour of Champions, hosted by the MS Society, in Orlando, Florida.

At this new company I was able to expand my general IT knowledge, and took every opportunity to learn things that I wasn’t even sure I’d ever use again. And when a colleague left the company and I was asked to take on her responsibilities temporarily while they searched for a replacement, I knew what I had to do. She was in charge of financial systems, and being as I was a graduate of the Rutgers School of Business, and had a pretty strong technical background, I felt this was finally my chance to not just have a job but to have a career. I went into my boss’s office and told him outright that I wanted the opportunity to take on her responsibilities (in addition to my own), and to be her replacement. He gave it about five seconds thought, saw that I was dead serious, and agreed to give it a shot. Long story short…I killed it. I became an integral part of the IT and Finance departments, and was lauded for doing an even better job than my predecessor. And when the company was sold, and I had to look elsewhere, I had zero problems finding gainful employment at a large credit card processing company (and I had two other job offers on the table as well). And that’s where I still am almost eight years, two promotions, and a salary I still can’t comprehend that I make later. As Steve Martin said in The Jerk, “I’m somebody now.”

While it’s true that Ren’s diagnosis forced me to finally find the motivation to make something of myself from a career perspective, it also allowed me to reach my potential in other areas. Most importantly, it made me a much better husband. I don’t think I was a terrible spouse by any means, but romance and affection were not my strong suit (I’m still no Valentino, but I try). It also made me fully appreciate the life that Ren and I had built together, and crystalized for me that not only was I married to the most incredible wife I could have ever hoped for, but that she was without a doubt my best friend in the whole damn world. I’ve never been a religious or even a spiritual person at all, but something brought the two of us together all those years ago on the Rutgers campus, and for that I’m forever grateful.

Right after Ren's diagnosis, we tried to get back to what we thought was a "normal" life.

Right after Ren’s diagnosis, we tried to get back to what we thought was a “normal” life.

The moral of the story is simply that Ren’s diagnosis provided me with the perspective to realize my full potential in all aspects of my life. Whether it had to do with our marriage, my job, my attitude about life, or anything else, I simply have become a better person since the day in June of 2003 when both of our lives changed forever. I’m still not or ever will be perfect (no matter what my mother might say…Hi Mom!), but I’m trying my damnedest to get as close to perfection as possible. And I’d like to think that Ren feels the same way about things from her perspective. I think that as lucky as we both knew we were to have each other before MS, Ren’s uncertain future and the realization that we had a major battle with MS on our hands clarified so much for us. We’ve both improved as individuals, which has then improved our relationship even more.

In 2010 we finally took our honeymoon (like Ren says, "we don't do things the way other people do"), MS and all.

In 2010 we finally took our honeymoon (like Ren says, “we don’t do things the way other people do”), MS and all.

I’d do anything in the world I possibly could to make Ren’s MS go away, and for it to never have happened, but then we might not share the unbelievably incredible bond and life we do now. I don’t know that either of us could have possibly believed that our relationship (MS or not) could ever be as fulfilling as it has become, but that’s the way our life just happened to work out…while we were busy making other plans.

Roots

Did you ever stop and think about your roots? I’m not talking about the roots your parents established for you when you were a child, but rather the roots that you have laid down for yourself as an adult. I think a lot about my roots, and the many factors that influenced the life I was trying to build as a young adult fresh out of college. Although I had a certain amount of control, much of it was beyond my grasp, and I just trusted in the power of the universe to point me in the right direction. 

ru flag

It’s really unfortunate that as seniors in high school, and possibly not even 18 years old yet, we are expected to choose a college, a major, a minor, and a life path when we are still under the protective layer of our parents. In my situation, I was getting ready to start college just as my sisters (twins!) were finishing at an out-of-state university. I was told that I could choose a in-state school only, and in exchange, I was given a brand new car. This was a big deal to 17 year old Rennie, who was driving a hand-me-down car that had been passed down from my dad to my mom, then to my sisters, and finally to me. In 1989 I was driving a 1978 Volkswagen Scirocco, four speed manual transmission, manual steering, manual brakes, manual windows, and manual door locks. And I loved it. I think I’d still be driving it today if it was still running, and if my MS would allow me to drive a stick shift, which it doesn’t anymore. 

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I grudgingly set about my applications to the state schools, but my heart wasn’t in it. I was a great student with lots of extra-curricular activities, solid SAT scores, and sat comfortably in the top 10% of my class. All of the possibilities for me were “safety” schools, it was just a matter of choosing the one that was right for me. I chose the one I thought was meant for me, and I applied early decision, which would have locked me in to attending that particular institution. When I was deferred to regular admissions, I decided that I would not even consider that school anymore. I resumed the search from my remaining options, and on a tour of Rutgers University, I fell in love with the place. I never looked back. 

ru train

With hindsight being 20/20, I can clearly see that without even knowing it, that’s when I started planting my roots. My life as I know it today was built around Rutgers University. I had no idea that the friends I made practically on day one would end up being my friends for life, or what I lovingly refer to as my “family of friends”. As adults, having been out of college more than 20 years, our roots have intertwined, and with that special family of friends, the foundation of my own roots is that much stronger. 

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The most important friend I made ended up becoming my husband, and then just recently, my fiancée (I know, I know. We don’t do things the “normal” way). One of the reasons why I believe so profoundly in the power of the universe is the fact that Bruce and I met and became friends. I had no intention of studying at Rutgers, and it was the last place I thought I’d end up. Bruce did not plan on attending Rutgers either. Yet somehow we ended up there, together, at the very same time. 

ru bus

As Bru and I began building our adult life together, we felt a connection to New Brunswick, and wanted to settle close enough to go any time we wanted. We have lived within six miles of Rutgers ever since we moved in together, and we have established our own family roots here. But, if I’m being honest, my roots are with Bruce, who is my partner in this journey. If he got the job offer of a lifetime in another state, we would go and we would continue building our life together. It would be weird living anywhere that wasn’t within a short proximity to Rutgers, simply because everything and everyone in my life can be traced back there. 

ru college ave

Roots are generally associated with a place. But the deeper those roots are, the closer to the heart they are, and they then become a part of you, regardless of where you are physically located. I feel incredibly fortunate that the roots I began to lay down for myself when I was just 18 years old, blossomed and led me to where I am right now: happily married to the best guy ever, surrounded by loving, supportive people (especially my MS fam!), a roof over my head, food on my table, some chihuahuas on my lap, and more good days than bad ones. 

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Ultimately though, it all comes down to the fact that you can take the girl out of Rutgers, but you can’t take Rutgers out of the girl.