Monthly Archives: February 2018

Date Night

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One of the things that Bruce and I have always been committed to is nurturing our relationship. This is not always an easy thing to do considering that we share our relationship with MS, a very fickle and uncooperative partner to say the least. But still we attempt a weekly “date”, with the understanding that some days are better than others, and plans can change at the drop of a hat.

On the one hand, we are lucky because we don’t have children, so there is never a need to scramble to find a sitter. But on the other hand, the very reason we chose not to have children is the exact reason why sometimes the date we had envisioned earlier in the week becomes a day in pajamas, watching movies from the comfort of our couch. Either way, it’s not about where we go or what we do, but rather it’s about being fully present with each other no matter what. We use this time to disconnect from our devices, and aside from taking a picture or two, we focus on each other. We don’t answer our phones, nor do we text (except maybe with each other when we have snarky comments to share about the people around us but don’t want them to hear us talking!).

This is generally how Bruce sees me every single day, unless of course I am in my pajamas.

Not every date is a grand event, but it doesn’t matter. Whether we happen to have concert tickets (at seated, manageable venues only), or we have simple plans to go out to dinner, the sentiment behind it always remains the same. It’s just us, enjoying each other, regardless of whatever else is going on in the world around us.  When we do go out, we make a big deal about it because we don’t know when we will do it again. And I actually put on real clothes (not workout clothing), I wear makeup, and I actually let my curls be free, without a bun and a Sweaty Band, which is how Bruce sees me five days a week. We have a simple life, but these moments remind me of how amazingly lucky I am to have this great guy by my side, and I like getting “dolled up” for him.

Dressed and made up, on our way out for a date.

Ultimately it has never mattered where we are, as long as we are together. Bruce sacrifices so much in order to cater to the unpredictable nature of my health, and I know that not all guys out there would show even a fraction of the understanding and acceptance that Bruce shows me every single day. I feel completely loved even on the days that MS makes me sad, angry, and resentful because of all that has been taken away from me. He is a constant reminder that regardless of our obstacles, MS can never take away our ability to love and be loved, to feel and express joy, and to love unconditionally and without abandon.

Those reminders that Bru constantly gives me even when he doesn’t realize it, are what sustain me on the days when our “dates” are spent at home and I feel guilty about the things I can’t control. The fact that he understands and does not blame me is something that makes me love him more than I ever thought possible. We have often heard people express that relationships are hard work, but we have never felt that to be true. Our love comes easily, naturally, and organically, and all these years later, he still gives me butterflies just like he did over 23 years ago.

So maybe our dates are different than other couples’, and maybe we don’t travel the world together, and maybe we don’t go to huge festivals, and maybe some people might think that our life is boring. But between MS relapses (which can be pretty scary), and breast cancer, and broken toes, and dislocated fingers, we get plenty of excitement and when it comes to date night, boring is definitely a good thing. Plus the whole point is connecting and spending quality time together, and that has been and will always be a given.

A Year

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Last weekend, Bruce told me that he has a few ideas for a blog entry, and in my world, that means ok, you’re writing next week’s blog. He should know better than to mention anything to me until he is 100% ready, right? Anyway, today I proudly present a great blog entry written by my favorite guest blogger!

One year. Webster defines a year as “the period of about 365 1/4 solar days required for one revolution of the earth around the sun.” Not exactly an exciting definition, but it does the trick. However, for people that have lived through certain revolutions of the earth around the sun, the contents of their story are what truly defines that year. And our last year has been a doozy.

As I write this, it’s a sunny, warmer-than-usual, February afternoon in Central New Jersey…seemingly a day like any other. But when I think about where Rennie was a year ago today, it gives me pause…because those were most certainly not ordinary days to be living through. She was just about a month removed from a lumpectomy on her left breast to remove the invasive cancer that a routine mammogram had revealed, and was about to embark upon six weeks of daily radiation treatment. We were living the proverbial day-by-day existence, hoping that we wouldn’t get any other surprises, and just trying to get to the other side of her treatments so that we could resume a normal life. It was not a fun time to be alive.

Undoubtedly, the worst part was watching Ren’s body’s reaction to the radiation. What started as just the annoyance of having to go to the hospital every single day for treatment, quickly turned into cruel and unusual punishment, as the skin at the treatment site began to burn and peel. I watched as the strongest person I’ve ever known was brought to tears at the thought of having to put ointment on the burn site, or even just taking a shower or putting on a shirt. The brutality of the treatment itself was unreal. I’m just thankful that Ren didn’t have to suffer through chemotherapy…a fate that most other cancer patients don’t so easily escape. Incredibly, she was one of the lucky ones.

The day of her last treatment was a celebration, in more ways than one. While a large contingent of family and friends made the trek to Princeton to be there that final day, that was just a party. The real celebration was more mundane than that. It was us just knowing that we were both getting our lives back. No more daily treatments meant that Ren’s life could return to normal, and it also meant that for the first time since her surgery three months earlier, her body could begin to heal both physically and mentally.

For me, the end of Ren’s treatments meant that I could finally sit back and digest everything that had happened, and allow myself to ease out of the “crisis management” mentality I’d taken on since the beginning of all the drama. I’m a generally nervous, and anxious person by nature, but one thing I’d learned about myself when Ren was diagnosed with Multiple Sclerosis in 2003, was that I’m at my best in those important high-pressure situations. I’m somehow able to compartmentalize things, and push the stress and anxiety away in order to power through things. It allows me to focus on what needs to be done, while making sure Ren has what she needs when she needs it. It’s one of the things I’m most proud of when I think about our relationship, and it’s something I didn’t know about myself until circumstances forced me to learn it.

Of course, after her treatment ended I had to go through my own bit of healing. Because I’d pushed my grief and fear to the background during this time, when things quieted down all those emotions came rushing back with crushing intensity. I ended up spending most of the rest of the year in a fairly deep depression that I had a difficult time recovering from. It was only after the 2017 calendar year ended, that I started to accept what had happened over that last revolution around the sun. It was a year that I will never forget, and hopefully never have to repeat.

A hand cast that Ren and I made on NYE 2017. One of the many things we did to close out the worst year of our life in grand style.

 

A Reason

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In light of circumstances happening in my life right now, I am bringing back a post that I originally published in August of 2014. I think what amazes me most is that years later, I still feel lost at times and certainly abandoned by people I never would have imagined would leave my side. But life has a way of surprising me, and not always in good ways, which means I just pick myself up, dust myself off, and give extra gratitude for the ones who remain by my side for the long haul. You know who you are so allow me this moment to thank you and tell you that I love and appreciate you more than you know.

When looking back at my journey with MS so far, I think that the hardest part has been how my friends and family have reacted to the ever changing me. When I was going through the grueling process of endless doctor appointments and tests that ultimately led to my diagnosis, I learned a lot about myself, but also about my friends and family. I quickly discovered who was going to stand by me for the long haul, and who was not prepared to handle the obstacles along the way. Some learned as much as they could about MS in order to be more understanding of my situation and more aware of what I was going through. Others slowly phased themselves out of my life, unnoticed until they just weren’t there anymore. Still others ran from our friendship, deserting me in my time of need.

This was not easy for me to accept. I don’t like to say goodbye to friends. A quality of mine that is both good and bad is that I love fiercely and with every fiber of my being. I would do anything for any one of my friends, and have always put the needs and wants of others ahead of my own. I give without question and offer support whenever I am needed. It’s who I am. I admittedly don’t understand when people are not like me. All I know is that I could never just abandon a friend, especially during difficult times. I will never relate to the way that some people could let go of our relationships, seemingly without a second thought.

Each time I relapsed, more friends seemed to fall out of my life leaving an indelible mark on my heart. I wondered why it was so easy to give up on years of friendship for reasons out of my control. Why couldn’t they still see me, the person underneath? Why couldn’t they see that my heart was still the same, only now it was broken into pieces, with each person taking a piece of it when leaving my side?

Through years of heartbreak, I finally realized that if someone couldn’t accept me as I am then I should not expend any energy hurting over it. The fact of the matter is that energy is limited for those of us with MS, and I decided that I was not going to waste what precious little I had on people who definitely did not spend any time or energy worrying about me. I started to scale back my efforts with those people, and suddenly all new and amazing people came into my life! Instead of being bogged down by negative energy, I surround myself with wonderfully supportive friends who spew optimism just like I do.

I am adjusting to my new normal every single day, and I am incredibly grateful for my small circle of lifetime friends who have remained steadfast at my side. But now I have newer friends who have shown me such tremendous warmth and compassion, and I don’t know what I’d do without them!

Finally, I recognize that not everyone is meant to be in my life forever. I am able to honestly declare that I am thankful to each person who has walked by my side, however briefly, on this journey of mine. I wouldn’t be the person I am now, with the understanding that I now have. As if I needed further clarification on how I came to arrive in this place, my (always full of wisdom) therapist brought everything into perspective for me by sharing a quote: “People come into your life for a reason, a season, or a lifetime.” Indeed!

 

Rest

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Rest. Such an innocuous word. You’ve probably said it to every single person you know, and probably multiple times. But I bet most people have never thought about the true balancing act that happens when you have Multiple Sclerosis. I would venture to say that I have been commanded to rest more frequently than the average person, and that’s ok… because sometimes I really do need the reminder.

If you have followed my blog, you’ll recall that in my past life (before MS decided I could no longer perform my job) I was a high school teacher. I worked long hours, arriving at my desk before 6 am, and usually not leaving until at least 5 pm. I then took work home with me, along with the emotional baggage that comes from truly caring about each of my students. My weekends were spent grading, planning, and prepping for the week ahead. It was a job that fulfilled me yet was truly frustrating because my work could never be done. It was all about prioritizing. Add to that lifestyle a daily schedule that was made for me and that I was contractually bound to follow, and I truly had no life. “Rest” was built in in the form of a period off, but resting seldom happened during that time, and god forbid I drank too much coffee, using the restroom only happened on scheduled time.  And I was able to keep up that pace without blinking for the first ten years after my diagnosis.

It is impossible to go from the scheduled life, which I thrived on for the better part of my career, to nothing. These days I have a schedule for myself, far less grueling than the one that was made for me by the Master Schedule Gods. I try to stick with my schedule because it makes me feel like I am human and I can be productive even without that job that ruled my life.

Gym, yoga, volunteering, and doctors’ appointments are on my schedule these days in place of being confined to the walls of my classroom like in my old life.

These days, I walk a fine line between “doing” and “resting”. Overdoing anything causes a ripple effect resulting in being forced to rest simply because my body does not allow me to function normally, even according to the standards of my constantly changing “norms” which are a part of every MS patient’s life. Not functioning means that I am down for the count, with a completely empty tank, and not enough energy to do anything, even eating or getting up to use the bathroom. And forget about taking a shower, because that just doesn’t happen.

As much as I hate it when I am ordered to rest, I know I should listen. But I want to think that I can still do as much as I used to, which I can’t. It’s a lesson that is hard to learn because in my mind I’m still that same strong, tenacious person that I have always been. In fact, I believe that I am a stronger, wiser person than I have ever been. Here I am, approaching 15 years with MS and I’m still learning and constantly adjusting to how far I can push myself, whether it’s in the gym, on my yoga mat, or even just with how much I can do socially before my body has decided that enough is enough.

Marty was always ready to rest with me and he made it so much better when i didn’t feel well.

One would think that after living a third of my life with MS, I’d have adjusted to all the changes that this invisible illness (and uninvited silent partner in my marriage) has brought with it. But a part of me longs to be, and often tries (without success) to be the person I was before my life was forever changed with my diagnosis. I am beyond grateful to my support system for their “gentle” reminders, because even though I want to be invincible and go, go, go, sometimes what I really need to do is just rest. It’s never what I want to hear but it is often what I need.

My biggest supporter and cheerleader. Without Bruce’s support I would not be able to live the life I am now.