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”.
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.
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.
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.
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!
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.
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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