Tag Archives: care partner

Hungry Years

Today I am bringing back an old entry, written by Bruce. I love his perspective, and recent conversations with some of my very special former students has had me thinking about the time in our life that we can look back upon, knowing that we were living in our “hungry years”, but also that we were blissfully unaware of how different things would be (for the better) once we established ourselves. Please enjoy this very special entry written by my favorite guest blogger.


Recently, I was listening to an interview with an older male actor (exactly who he is doesn’t much matter to the story here, plus most readers wouldn’t even know who the hell he is anyway), and in it he referred to his “hungry years”. By this he meant the early years of his marriage, when his career had not yet taken off, and so times were lean for him and his wife. When asked if he looked upon this time negatively he responded that they were actually some of the best times of his life, as he was still so young and naive, and didn’t fully grasp the struggles he was enduring. This made me think about our own “hungry years” in the early years of our relationship, and when I mentioned it to Rennie she felt it might be an interesting topic for the blog. The catch was that since I was the one that brought it up, I’d have to write it. So here it goes…

In the summer of 1998, after dragging my feet for the first three and a half years of our relationship (not to mention the fact that we had been such close friends for over seven years), Ren and I finally moved into our very own apartment. It was a beautiful place in a brand new development in North Brunswick, one town over from Rutgers University (where we’d met), and while it might have appeared to those that saw it that we had it all together, it wasn’t really the truth. Like most couples in their 20s, we were still finding our place in the world. Both of our careers were still in their infancies, and while Ren had spent the early years of our relationship working a high-paying retail job, that lifestyle just could not be sustained. The stress it was putting on her mind and her body, as well as our relationship, was too much to bear. A few short months before we moved into our new place she’d made the move out of retail, but there was a price to be paid for the more humane lifestyle…a huge pay cut. At the same time, I was working at my first “real” job out of college, and was finding it hard to figure out what I wanted to be when I grew up. So while we weren’t anywhere near the poverty level, we certainly weren’t living in the lap of luxury either. But we had each other, and considering everything that had to happen just for us to end up together in the first place, I often felt like I was living in a dream that someone would be waking me up from at any moment. I had zero complaints.

This one is from the "really hungry years", before we even lived together.

This one is from the “really hungry years”, before we even lived together.

With no money to do anything all-that-exciting, we quickly stumbled upon what would become our usual weekend routine. On Friday nights, we’d start with dinner at whatever “gourmet” chain restaurant we had a coupon for that week (Applebee’s, Chili’s, Bennigan’s, etc.), and then follow that up with a leisurely stroll through Target, where we hoped we could cobble enough cash together to buy the things we actually needed for the new palatial Rankin/Leighton estate. Once done, we’d come home and watch the ever so thrilling “Sabrina, the Teenage Witch” and whatever else we could find on the basic cable package we were lucky enough to be able to afford. Saturdays and Sundays were much the same, but since we’d already splurged on one meal out, Ren would cook…and often with food we’d lifted from my parents’ pantry the last time we’d visited them. Crazy stuff.

The spacious kitchen from our first place. It was bigger than some of the places Ren lived in by herself before we moved in together.

The spacious kitchen from our first place. It was bigger than some of the places Ren lived in by herself before we moved in together.

There’s one memory from this period that is still so vivid to me that I almost feel as if I’m traveling back in time when I think of it. It was a Saturday night in December 1999, and we’d recently booked our wedding in Las Vegas for the following April. Christmas and Hanukkah decorations lit up our apartment, and we were spending our weekend the way we’ve always loved to…talking, laughing, and enjoying each other’s company and the life we’d built (or were building). As the evening got later, we both drifted off to sleep in our living room, with Ren on the couch and me in the recliner. Sometime after midnight I awoke to the sounds of Beck performing his song “Mixed Bizness” on Saturday Night Live, and I looked over to see Ren peacefully asleep. I then slowly panned around the apartment that was so unmistakably “us”, smiled and then marveled at how perfect everything was in that one moment. A moment that could have easily been innocuous and forgettable ended up perfectly capturing that exact time in our life.

Our very first Christmas tree in our very own apartment. Together.

Our very first Christmas tree in our very own apartment. Together.

The most beautiful thing about those hungry years was that we were so young and that simply placing down our roots together, on our own (except the usual raiding of my mom’s pantry) felt truly blissful. Now with hindsight being 20/20, we can look back on the years of living paycheck to paycheck and understand how much we struggled and how we always made do with what we had…because we had each other. We now recognize that even though we were struggling then, there was no preparing us for the real battle that had not yet presented itself to us: life together with Multiple Sclerosis.  

Taken on Ren's 29th birthday, just shy of two years before her MS symptoms first presented.

Taken on Ren’s 29th birthday, just shy of two years before her MS symptoms first presented.

Now, with over two decades together to look back upon, it’s easy to recognize the times that weren’t so easy…even if at the time they seemed oh-so-normal. But as with many things in our life, there’s the time before MS, and the time after MS. That line of demarcation provides all the perspective we’ll ever need to realize that even though we had good times, and we had bad times…we had times. Times together, which is all that really matters, even if you’re hungry.

This summer we ventured back to the very spot that I first saw Ren walking across campus. We'd just graduated high school, and were attending summer orientation before starting our freshman year at Rutgers.

This summer we ventured back to the very spot that I first saw Ren walking across campus. We’d just graduated high school, and were attending summer orientation before starting our freshman year at Rutgers.

Thankful

Having just celebrated Thanksgiving, I am feeling a need to talk about gratitude. Most people don’t think enough about how many blessings they have in their lives because they focus too much on the daily humdrum of life. It is much easier to focus on negativity when it sometimes does take more effort to open your eyes to all the beautiful things that are right in front of you. I live my life, acknowledging my gratitude twice daily: morning and night (through journaling), making a conscious decision to do so. In honor of this month of gratitude, here are 30 (thirty!) things for which I am grateful, and believe me, I could list about a gazillion more than what’s here:

(Aside from the first one, listed in no particular order!)

1. Bruce: my other half, my partner in crime, my best friend, my husband, my fiancée. He never wavers, and he has taught me how to love purely, and with all that I have. No matter what obstacles life throws our way, we conquer them together.

2. A roof over my head, food in my fridge, and love in my heart. These all go together because we had to live in a hotel for 5 months while our home was being built, and I can never take for granted how it feels to be home. We spent plenty of our younger “hungry years” food shopping at my mother-in-law’s pantry, and now we have a well-stocked fridge and pantry, and even when we neglect the food shopping, there is still always enough to make a simple meal. And love because no matter where Bruce and I live, there is always love in my heart.

3. Autumn in NJ. There is nothing more beautiful than the palette of oranges, reds, and golds that naturally decorate our environment, even on years when they say it’s a bad season for foliage. Sometimes I wish I could pull my car over even in the worst of places because the view is that beautiful. The fall also reminds me that I survived another summer and that the coziness of winter is imminent.

4. Every single day when I can put my two feet on the floor and walk unassisted. I work hard to stay strong, and after 14 (+) years with MS, this is something that I am truly grateful for. (Don’t ask me about going up and down steps though!)

5. Yoga. It has taught me to connect my mind, body, and spirit. As much as my lack of balance can make things difficult, I like the challenge, and I never give up. Walk into my house almost any day of the week and you’ll see my mat, evidence that I am constantly practicing.

6. My family (steps and all!). They are spread all over the east coast, but their support is felt from all corners.

7. I feel a special sense of gratitude for my sister, Lorri, and my brother-in-law, Ken. They have been by my side (literally) through all the ups and downs. My sister was there with me the day I found out I had cancer, and both of them were there the day I celebrated the end of my cancer treatment and they witnessed me ringing the gong.

8. My Rankin family. For almost 23 years they have loved and supported me without question. And because I am a Rankin I have been blessed with a little sister and a nephew, both of whom I absolutely adore.

9. My MS family. This motley crew of crazies is essential to my mental health. Although support from family and friends is great, nothing replaces this group who can truly understand the challenges that I face every single day.

10. Living in this day and age where there are treatment options for MS patients to help slow down illness progression, giving us all a better quality of life. While I don’t think I’ll see a cure in my lifetime, as long as they continue to find more treatments for us, my gratitude is infinite.

11. My fur babies, past and present. Rescuing these poor pups that never would have been adopted otherwise has added so much joy to my life, and although it’s heart-breaking to lose them, the happiness they bring on a daily basis is worth it.

12. Diane, my trainer. In addition to working me out, she has become a trusted friend, who I consider family. She plays many roles for me: cheerleader, therapist, trainer, sister, and friend. She has helped me change both my body and my mind, and for that alone I am eternally grateful. She knows what I need when I need it, and words can’t describe how important she is to me.

13. My volunteer job at Marty’s Place Senior Dog Sanctuary. The “residents” are so loving, and I have met so many other like-minded individuals in both the many other volunteers I have met there as well as in the very skeleton crew of paid employees. They never waste an opportunity to thank the volunteers and to let us know how important we are in the daily upkeep of this extremely special place.

14. Having taken my cancer diagnosis and used it to build more inner strength.  Today I can look back at the beginning of my journey (starting just about one year ago), knowing that I faced it head on, with a smile on my face…and kicked ass.

15. Being proactive in my medical care, knowing how to use the tools at my disposal and sift out the fluff to understand the meat. I’m not afraid to advocate for myself, and I can do it without getting angry.

16. Having learned to listen to my body, and to understand what it needs and when it needs it. I know when I am over-tired and need rest, and I know when I can push through. I know when I have a gut feeling, I need to listen to it, and I’m grateful that I have learned this lesson.

17. My former students, near and far, who continue to play such an important role in my life. They help me to see the good in others as I watch them blossom as adults, doing amazing things. They make me happy just thinking about how far they have come, and they fill my heart up with endless amounts of pride.

18. Meditation, specifically Transcendental Meditation (TM). Through the process of learning TM, I am generally a more self-aware, calmer version of the person I used to be. TM allows me to settle my mind and give myself those 20 precious minutes of clarity.

19. Air conditioning. It sounds trivial, but when you suffer from heat intolerance due to MS (and you lose your vision when overheated), it takes on new meaning… especially when you live in NJ where the summer months bring what feels like never-ending heat and oppressive humidity. Also, the curly girl in me appreciates the AC as well, but for completely different reasons!

20. On-line shopping. Being that crowds make me anxious (mostly because I can’t feel my feet which throws my balance off), being able to still do my holiday shopping on my own, without fear of walking into people (or things) and embarrassing myself, helps me maintain my independence.

21. Social media. How else could I have reconnected and stayed in contact with so many amazing people from so many different aspects of my life? (Pssst: if you don’t see me on Facebook, it simply means that things got too political for me and I took a little break, but you will always see me on Instagram!)

22. Photography. This little hobby of mine has given me friendships with some pretty spectacular people. I never knew I could feel such a strong connection with friends simply because of a shared passion!

23. My forever friend, MHP, for always ALWAYS loving me. We don’t live ten minutes from each other like when we were younger, but it doesn’t matter. She is forever in my heart and no matter how long we go in between visits, it’s always like no time has passed at all.

24. My “brother from another mother”, BH, for coming back into my life at a time when we both needed a specific kind of friend to suit a specific purpose. He has seen me through so much and I am so thankful for his kindness and support. Not a day goes by without a text or a phone call, which in itself is hugely comforting to know that he has my back always.

25. Netflix, Hulu, Amazon Prime, and On-Demand. Being able to watch anything we want so quickly, without having to go out to the movies is the best. Aside from the germaphobe in me who gets grossed out by sitting in chairs that who knows what kind of person sat in last, the MS patient in me appreciates not having to choose the right moment to go to the bathroom without fear of tripping in the dark. At home I can press “pause” as many times as I need to!

26. Having chosen a profession and worked long enough to earn disability retirement so that I could collect my pension early, allowing me to take care of myself and my illness, and still contribute to the household bills.

27. The families of former students who have brought me into the loving fold of their own families because of the relationships we established so many years ago. It’s hugely validating to me, not just as a former teacher, but also as a human being. All I did was love their kids and help them to succeed, but that’s all I had to do, apparently. I’m so thankful to feel so loved.

28. Coffee. And certain medications. When chronic fatigue rules your life, you must give thanks for anything that helps you push through the day, whether prescribed by a doctor or otherwise.

29. Texting. Sometimes I just don’t have it in me to have a full conversation over the phone, and texting allows me to check in with (or be checked in on by) friends and family, with less effort expended. It’s not that I don’t want to talk to loved ones, but sometimes, I simply do not have enough energy.

30. I am grateful for this life I’m living. It’s not perfect, nor is it what I envisioned for me and Bru, but it’s the only life I have been given. Despite the obvious, our life is perfectly imperfect, and overcoming so much together only makes it that much sweeter.

So there you have it. With very little thought, I have listed a whole month’s worth of people and/or things for which I am eternally grateful. I’m not saying that you need to physically acknowledge your gratitude twice daily like I do, but I am saying that if you start and end your day with gratitude, there’s no way that you will be able to fixate on any negativity that arises during the day. We all deal with stress in our lives, and I have found the best way to counteract stress and negativity is by focusing on gratitude. I dare you to try it. You’ll be amazed at how differently you view your world. So tell me… What are you thankful for?

PS. I took a little tumble and dislocated my finger the night before posting this blog, so I am adding the fact that I’m grateful that my finger isn’t broken, and should heal up much more quickly than if it were broken. I’m also grateful that I didn’t dislocate a body part more important than a pointer finger.

Patient Advocacy

I’m not your typical patient. Not by any stretch. I value the recommendations of my health care team but I do not blindly listen and follow orders like a good soldier. I am an educated woman, with a masters degree in Library Science, which basically means research is my thing. Although anecdotal research serves a purpose, I like to dig deeper using educated research where I can compare data. I also understand statistics and how easily they can be manipulated to suit the needs of any study. Although I have been met with my share of resistance, ultimately I think my medical team understands that this is just who I am, and although they aren’t always pleased with this kind of patient, they respect it.

The last two weeks it feels that all I’ve done is defend myself and my choices, particularly where it comes to my treatment plan for MS. Did you ever have a really bad gut instinct about something without being able to explain why? Well I have. Generally I listen to my body because I am very in-tuned with it, and the last time I didn’t, I ended up crashing my car. Well I was having that same feeling about the treatment my MS specialist and I had discussed at my last visit and it had me very upset. I felt torn. I have always been on the same page as my neuro, and for 14 years I have trusted him implicitly. I still do. But I felt there were other, perhaps less orthodox treatments, that were not being discussed. And on top of everything else, I was informed that I have a thyroid nodule (which is most likely nothing), but no cancer patient ever wants to hear the word nodule no matter how innocuous it might seem to others.

It’s not that I panicked exactly, I just wanted to know more about this nodule as soon as humanly possible, and I couldn’t get anyone to listen to me. So I did what I know how to do. I did my own work, and managed to get an appointment with an endocrinologist (who is highly recommended) at the end of November when they are actually booking in late January.

I made an appointment with my MS specialist to discuss the other treatment options, because with a ginormous patient load, it’s the only way I could get some time that would specifically be mine. I made an appointment for the end of December, but as luck would have it, there was a cancellation so I was able to get in this past week. In the interim I had already called other specialized MS comprehensive care clinics in preparation for a second opinion of a new treatment plan, and shared that information freely with my MS specialist of 14 years. I simply let it be known that if there wasn’t further discussion about my options then I was prepared to do what I needed to do to get what I feel is the right path for me. I was not met with anger or resistance, but rather, what appeared to be respect. Because I made it clear what I wanted and needed… but I did it in a way that was not confrontational or angry, but simply by stating the facts as I knew them. I used 13 of my 20 minutes that is allotted for each appointment, and I left with a great sense of relief and accomplishment.

Being your own advocate, not just as a medical patient, but in any circumstance at all in life where there is someone in a perceived position of power over you, is a lesson that is hard to learn but invaluable in effect. It’s a lesson I tried to teach my students when I was working because being able to discuss what you need without getting angry or confrontational, is very empowering, and let’s face it… no one is going to advocate for you. You are your own best (and likely only) advocate.

Life will always throw curve balls our way, and the way we face them is up to us. I am the kind of person who sees that curve ball, and I don’t just stand there without attempting to smack it out of the ball park. Many moons ago, my softball coach told us that when you have two strikes against you, it’s always better to go down swinging rather than just standing there looking at the ball. It’s advice I have carried with me for the last 30 years or so, and I have applied it to practically every aspect of my life. This week I feel like I hit a home run for Team Rankin. And, like I’ve said before, we never lose.

(Shout out to my softball coach, Jean Hildebrandt, for giving me this advice that i have carried close to my heart throughout the years.)

No words necessary!

 

Do-over

Last week, I wrote about our plans to have a wedding since we never had one. This week, I proudly present an entry written by my one and only, Bruce, relating to the same topic. I know his posts are very popular, and I am sure you will all love this one as much as I do.

Over the years, I’ve been asked a lot how exactly I’m able to handle everything that comes with Ren’s MS. Now as we’ve moved into middle-age, and breast cancer has been added to her plate, the frequency in which I hear this from someone has increased almost exponentially. Usually, my response revolves around how I just keep my head up and continue moving forward, but that doesn’t begin to adequately explain what it is to be a care partner and to struggle through everything that Ren has to put up with from day to day. And as I’ve written here before, our relationship is such that whatever one of us goes through, we go through together. So while I’m not personally suffering with the debilitating nature of MS, or struggling through radiation treatments, I’m as close to it as anyone possibly can be. As a result of all that we’ve gone through, our relationship has strengthened and brought us to a place I didn’t think was possible. It’s a place (as Ren mentioned in her entry last week), that most couples just don’t find themselves in. Thankfully, that is not us at all.

When considering exactly what it is that keeps me going through it all, it ultimately comes down to one thing: I love Ren. I don’t just love her, but I’m in love with her. And I pretty much have been in love with her since we met as 18 year olds at Rutgers University…I just was too young and stupid to completely grasp it at the time. What started as a simple crush grew and grew into this overwhelming need to have her in my life all the time, and after several years I was lucky enough to finally have that happen. Of course, as the saying goes, you have to be careful what you wish for, because once you have it it’s not always what you thought it would be. Don’t get me wrong, because Ren has always made me incredibly happy, but once we were together I had a very hard time dealing with it. In our early years, I often would put her second (or third or fourth) behind my friends, and certainly could be accused of taking her for granted. Being such good friends with her before we became romantically involved made things easier for us than most new couples, but for me they might have made them too easy as I ended up treating her too much like my buddy Rennie instead of my girlfriend Rennie. Add to this my tendency to reject romance completely (Ren once stated that a rock on the ground was more romantic than I was), and think of marriage as an unnecessary business arrangement, and you can see how there were many times when Ren didn’t always believe that I was as devoted to our relationship as I insisted (and knew) I was. And as our friends started to get engaged and married, my resolve to ever be the contrarian got stronger and stronger. Basically, I was a jerk.

When Ren and I finally did decide to get married, as she’s described here, we went with a very low-key approach. This was done for several reasons (more than one of which was my reluctance to look like a hopeless romantic in front of my family and friends), but the most important of those reasons was that we just didn’t have the money for a big wedding, and neither of us thought it responsible behavior to go into mounds of debt for one day…even if it was our wedding day. I know at the time Ren would have liked a “real” wedding, but as she has often said, she’d marry me with a piece of string tied around her finger. In the end, she was just happy that I was finally committing to her in the way that she’d always dreamed I would.

This is our actual wedding picture. Nothing conventional about it.

The first couple of years of our marriage were rocky, and there were doubts at times about how long it might last, but we were finally coming out of the woods as we approached our third anniversary. Then Ren was diagnosed with MS, and our world was turned upside down. Suddenly, our issues (which in retrospect were stupid little things) meant nothing, and it was all about getting a handle on things and ensuring that she was receiving the best care she could. And as I wrote about here on the blog, my attitude suddenly began to change. Even though it might not look that way, I’d always been devoted to Ren, but a metamorphosis was starting. Slowly, my attitude began to change. I no longer took her for granted, and I found myself wanting to be more romantic and spend more time with her, and just her. I also found myself thinking about finally giving her what I should have given her years before: a real engagement. It was an idea that gestated for the better part of ten years, and which did result in a renewal of our vows for our tenth wedding anniversary in 2010. But I knew that wasn’t enough. I had to do more.

At the renewal of our vows, celebrated with about 40 people at our favorite spot in New Brunswick.

Eventually, as my career began to pick up steam, and I was finally earning a substantial enough salary (or so I thought) to be able to give Ren what she deserved, I set the plan in motion. In the fall of 2015, I realized it was time to move ahead with things, and began looking at engagement rings. Yes, we’d been engaged before, but not in any true sense, as we’d mutually agreed it was time to get hitched. There was no dropping to one knee, and certainly no romance. Young Bruce simply would not have that. I badly wanted to right that wrong, so I went out and bought an actual engagement ring, and on the campus we’d met on so many years ago, I retroactively popped the question. Thankfully, she said yes (phew!).

Taken probably 3 minutes after the proposal!

On what was one of the happiest days of her life, I finally realized how important it was to have done this for Ren. She was ecstatic. And with everything we’d been through over the years, it was inspiring to see. For that one night, Ren finally felt like the princess she should have always been, or at least like the princess I should have made her feel like when we were younger. After all, she’s simply been the most important person in my life for more than half of it…a life that she completely changed by just being a part of it.

In the months following my “retroactive proposal”, our relationship went through a RENnassaince (pun completely intended), and we realized that we were even more in love than we’d ever been. During this time the idea of actually having a real wedding on our 20th wedding anniversary came up, and when I looked ahead at the calendar and saw that it fell on a Friday I just knew we had to do it. So this past summer we booked a venue, and have started to look into all of the other details needed to plan the big day. And now we can afford to do it exactly the way we want to, and we’re old and wise enough to know exactly what we want.

But in the end, this whole thing is really about Rennie. She’s the most incredible person I’ve ever known for so many reasons, even though I too often spent some time early in our relationship taking her for granted. While I still beat myself up for my behavior back then, I know that it was short-lived, and that I’ve spent much more of our time together appreciating her for the person that she is. And I get better at it all the time. Regardless of what obstacles MS or cancer puts in our path, I know that not many guys get to date their crush, much less marry them. And on April 17th, 2020, I’ll get to marry her all over again.

Wedding

So Bruce and I are not the kind of people who live our lives according to other people’s standards. Most people would consider our marriage somewhat unconventional (not in any gross ways 😜  ), but to us, we have always just done what works for us. In the late 1990’s and early 2000’s, all of our friends had extravagant proposals followed by equally as lavish weddings. But not us… we opted for a trip to Vegas (just the two of us), a webcast (very cutting edge in the year 2000), and a casual celebration after the fact. And you know what? I wouldn’t have changed a single thing.

As the years passed, I still didn’t have any regrets. Our friends started having babies, and we chose not to. At the time when babies were being made, we were dealing with the addition of MS to our family and that was enough. And even though we took some heat all around for not making babies, you know what? I still wouldn’t have changed a single thing.

Random date night picture…

As we began approaching what most refer to as “mid-life”, we were falling deeper and deeper in love with each other, while many of our friends began divorcing, cheating, or both. Then, on a random Saturday “date night” in March of 2016, Bruce and I went to one of our favorite places in New Brunswick, where he got down on one knee and actually proposed to me (retroactively). It was, by far, the most romantic night of my life. We didn’t know at the time what the proposal meant for us, except that Bruce wanted to give me what everyone else got in our 20’s, and even though I never had regrets or doubts, on some level I always wanted him to declare his love for me in a personal way like all my girlfriends had experienced from their guys years before. Still, I wouldn’t have changed a single thing.

Here I am on the night of my proposal, walking on cloud 9 and admiring the beautiful engagement ring that Bru placed on my finger.

For a few weeks, we rode the high, feeling like a newly engaged couple despite having been together for over 20 years already… full of excitement and butterflies, the way it should be. But better. Because in my mind I knew that this guy of mine wanted to be married to me more than ever, even after so many curve balls that life had thrown our way. We talked a lot about how to acknowledge our “engagement” and what we discovered is that we wanted a wedding. And you know what? I wouldn’t change a single thing!

I still cant believe he orchestrated such a perfect proposal that I could never forget.

There is something very different about declaring your love publicly when you are just starting out your life together,  than doing the same as established adults. For one thing, we can do everything the way we want to because we are in a different financial position than we were in our 20’s. We know what we want, what we like, and if anyone disagrees with us, we don’t care! So, months ago, we booked a venue that is very representative  of who we are, and on our exact 20th wedding anniversary, we will finally have a wedding to celebrate our amazing life together with our family and friends. And I wouldn’t change a single thing.

Bruce has a countdown until our wedding day on his phone, and every once in a while he sends me a screen shot so I know how many days are left.

Suddenly I find myself watching bride shows like “Say Yes to the Dress” and “Four Weddings”. I spend time on Pinterest browsing wedding dresses, wedding hairstyles, wedding invitations, and anything else wedding related. It’s not like I can do too much because this isn’t happening until 2020! I even have a wedding planner/consultant (shout out to Dani!❤️  ), who is amazing at details and she keeps telling me we have to get to work. What do I know about this stuff? Nothing! Which is exactly why I need her, and I wouldn’t change a single thing!

This is what I know. I know that although we aren’t doing this in the “right” order, it is exactly the right order for us. I know that I want Bruce to see me in a wedding dress and be waiting for me at the end of the aisle. I want to declare my everlasting love for the guy I can’t live without in front of everyone. I know that I want to celebrate our love with those we hold dear. And although having a wedding after 20 years of marriage isn’t the way people normally do things, I know, without any doubts whatsoever, that I wouldn’t change a single thing.

We should all be so lucky to fall deeper in love as the years pass, rather than grow apart as often is the case. Bruce and I are proud of the strength of our relationship, and even though we have had many obstacles to overcome, we have weathered the storms together, and I wouldn’t change a single thing.

Gratitude

This week, my MS sisters and I were honored to participate in a video project intended to be shown at a very prestigious annual fundraiser for the MS Center where we are patients. Then to add to my excitement, I was asked to give a speech to the crowd, right after Daniel Rodriguez, the singing police officer who performed the national anthem on almost every major event here in the tri-state area in the wake of 9/11. The whole campus of the hospital is transformed into an elegant venue, as it becomes “an evening in the vineyard”, the biggest fundraiser of the year for our MS Center. Tickets are not cheap, so just being there is an honor in itself.

His voice blew me away!

For me, I am in my element when I am in front of an audience, using my skills honed through years of teaching, educating others. I love being able to share my personal struggles with others so that they can see that everyone struggles in so many different ways. I like seeing light bulbs go on in people’s minds as they make connections that they wouldn’t have made without having me standing in front of them as a visual. I like being able to speak on behalf of so many, especially when the audience is receptive (something I didn’t experience very often as a teacher!).

I’m very comfortable at the podium.

Remembering how despondent I was when I tearfully resigned my teaching position, makes me extra happy to be able to speak at events like this one. I have often been told that I’ll always be a teacher, except now the world is my classroom and my students are not held to the confines of a high school setting.

On the video screen at the entrance to the event.

Throughout the night, I had perfect strangers coming up to me and thanking me for talking to them, and telling me how inspired they were. They were the ones opening up their wallets to support the cause, yet they were quick to tell me how much they enjoyed listening to what I had to say. And all I could do was thank them right back, not only for their compliments but also for their generosity. I witnessed the kindness of strangers in the form of more handshakes and hugs than I could even begin to count. It’s nights like that when I am reminded of how positivity is contagious, and I love that. There was no pity or sadness, but rather celebration of good people doing good things for a community that desperately needs it. My heart literally could have burst out of my chest with gratitude.

My sisters.

As for me, I enjoyed a beautiful night filled with good food, good wine (and beer), and amazingly generous people. Plus I spent it with my MS sisters and my partner in crime, who rearranged his work schedule to be my date. At one point during the evening, I looked around just to take it all in so that I could lock it away in my memory for safe-keeping. At the end of the night I should have been exhausted but instead I found myself invigorated. I’m pretty sure that’s what people mean when they talk about being “high on life”.

All four one. Taken from our video.

With all that I have been through in 2017 with my breast cancer diagnosis and subsequent treatment, this night was exactly what I needed to kick-start a happier, healthier ending to what might have been the most difficult year I have ever had. No medication or treatment plan could have left me feeling better than I did when I left this event. I am so glad that I stopped to really feel the love because the memory will sustain me for longer than you could even imagine.

Just a sampling of the goodies. (photo credit: Carla)

(Also, sending a big shout out to my former student who served me some awesome craft beers. Thanks, John!)

As Is

Some things are so hard to explain to others when you have a chronic condition. It seems like no matter how many ways I try to describe what it’s like, it just doesn’t matter, and because others don’t understand it’s all the more frustrating for me, and thus I feel pressure when I shouldn’t.

I couldn’t ask for a better big sister and bro-in-law.

I have simplified my life because I have had to, not because I wanted to. Things I used to do with no problem have become exponentially harder as the years pass and my condition throws more challenges my way. Gone are the days when I could plan to do anything I wanted: travel to Florida to visit family, zip in and out of the city on the train, spend hours shopping, or even just have firm plans for both days on any given weekend. But alas, those are all parts of my past because I am no longer as capable.

My beautiful MS sisters showing their support by wearing my warrior shirt.

People look at me and think I look fine.  But they don’t know how hard everything is for me. When we have firm plans (such as this week when we are attending a concert), I know that I need take time to prepare, both mentally and physically. I will limit my activities so that I am well-rested and in the right mindset to completely enjoy what is planned to the best of my ability. It’s not that I don’t want to be social and do things, but everything is so hard. Even things like taking a shower and getting myself to look presentable are difficult for me for so many reasons, not least of which is what I call “painsomnia”, a condition that affects me every single night. I challenge even the healthiest of individuals to live a “normal” life with serious sleep deprivation.

This girl gets me on a level that most of my friends can even begin to understand. Notice she is wearing my warrior shirt? Love her.

Often times when we have plans, I say that I am a “game day decision” because I never know how I’m going to feel. And if I should happen to miss an event, I am accused of being purposely “absent” because I do attend other events. Unfortunately, MS does not care what things happen on which days, and frankly, MS simply does not play nice! I don’t use it to “get out” of things, but I do realize how it limits me. I know which scenarios are doable for me, and which are not.

This guy showed up when others ran away.He is my brother from another mother and I am so grateful for his friendship.

This has not been an easy lesson to learn and I have often struggled with it through the years. I walk a fine line between happily doing the things I can and want to do, and being sad and frustrated because I know that I can’t do certain things that I used to love. Being who I am, I have learned to look at everything in my life through the glass half full lens.

Sisters from other misters.

Simply put, that means that I am grateful to have had so many wonderful experiences even if I can’t still enjoy them. Instead of dwelling on what I can no longer do, I focus on what I can do. I no longer care what anyone else thinks or says about me because I have so many awesome people who accept me exactly as I am now, not least of whom is my partner in crime, Bruce, who has never wavered. Skinny or fat, makeup or none, blonde or pink, mobile or immobile, it just doesn’t matter.

The. Best. Ever.

Now I only surround myself with people like Bruce who never make me feel anything but whole… a human being not defined by my diagnoses but rather by my character. Never do I have to explain “why” because the people that matter already know the answer, and they love me anyway. I am beyond justifying it or defending myself, and with my peeps I never have to. Even though my inner circle may have gotten smaller through the trials and tribulations of life, it offers me more strength, support, and love than I ever thought possible.

Never any shortage of laughter (or love) with my guy…

Thank you to my inner circle for keeping me whole, grounded, and genuinely happy. I don’t know how I got so lucky, but it doesn’t really matter I guess. I’ll just continue to thank the universe every damn day, not for giving me MS, but for giving me all the gifts (in the form of lessons learned and an extra special MS family) that I have been given as a result.

Relative

I hate it when people say to me that they feel bad complaining about things to me because “I deal with so much”. On the one hand it is kind of sweet of them to say that, but on the other hand, I’m still a human being and friend, and my problems don’t preclude me from being able to listen to others and offer my advice.

The truth of the matter is that everything, EVERYTHING is relative. I understand that on the surface people might think that their issues are unimportant but, as I always say, the only person you can compare yourself to is you. And that goes for every aspect of life. When one of my MS friends tells me that her knee actually started bending (after lots of hard work) when it hadn’t bent like that in years, I get so excited because relative to her past, it is huge. She may as well have run a marathon, as far as I’m concerned. I never compare anyone to me, nor do I compare myself to others. It’s all about personal progress, and the same goes for personal hardships.

I realize I have had my share of personal hardships, but I don’t look at things that way. I am of the mindset that my lot in life is exactly that: mine. It’s unfair to compare myself to anyone else, and if I did I would be a completely different person than I am today.

The fact of the matter is that I don’t look at other people and compare them to me, questioning why I have been dealt the hand I have while others have a seemingly “better” hand. Problems are problems, and like assholes, we all have them. Mine are no more important than anyone else’s, and in fact I’d venture to say that mine are easier because I’ve had to deal with so many through the years, and I have gotten pretty good at handling them in my usual glass-half-full way.

So it’s not like I’m saying I want more obstacles to overcome, but I never thought I’d appreciate them the way I do, because each one makes me a better version of me. The strength I’ve derived from all I’ve been through makes me a kinder, more sensitive, more understanding human being, and overcoming the bumps along the way is perhaps the most empowering feeling I have ever had.

The challenging parts of life are not easy, but the way we respond to them molds us into who we are. It’s unfortunate that so many people can’t see the beauty that awaits when you overcome those difficult times because it is powerful and we all deserve to experience that feeling. Plus giving up, for me, is simply not an option. We get to choose our fate (in a way) by how we handle our life circumstances. Why would anyone not choose empowerment over the alternative?

Lucky to have this guy who supports me through it all, which makes everything just a little easier.

Tough Break

If I thought I was a hot mess before, with a fused spine, Multiple Sclerosis, breast cancer, and recent issues with my back, I had no idea it could/would get any worse. Especially since I’m a big believer in universal karma that gives us back what we put out there. I like to think I put my positivity out to the universe, and I do feel that I have always been taken care of as a result.

This week as I nurtured my back, icing it, stretching it, seeing my chiropractor and my acupuncturist, plus using my portable TENS machine at home, I started to finally feel like I was turning a corner. Then due to a 4 am wake-up call from my beloved Marty  and a subsequent fall down the stairs (which is not really unusual for me except I usually fall UP them) I ended up with two broken toes right at the joint where they meet the foot. I’m used to falling but usually I manage to do it without actually breaking any bones. I have had my share of scrapes, bumps, and bruises (mostly to my ego), but this is a new one for me. When I woke up a few hours later and discovered two of my toes pointing the wrong direction and bruising starting, I knew it couldn’t be good. But, it also could have been much worse.

6-8 weeks of this lovely shoe. Plus no yoga and only upper body workouts. This is a massive bummer for me. Particularly the no yoga part.

It’s true that for the next six-eight weeks, I will be very limited as far as physical activity goes: no yoga, only upper body exercises, and a lovely shoe that I must wear for the foreseeable future. Life with MS does this. I’m always working my butt off to take one step forward and then something silly (and often avoidable) happens, setting me back two steps. It’s an endless cycle.

The truth is that I am not invincible, contrary to how strong I feel at times. My MS family and I talk about this kind of thing a lot. We can do lots of difficult things because we are focused when we attempt them. But it’s the little things we do that we take for granted (like walking up or down stairs), and assume we can do them as easily as always, but that’s just not the case. Everything is harder when you have MS and even more so when you can’t feel your feet. Patience is easy to preach but hard to practice, specifically for someone like me, who likes to keep her body healthy and moving.

In a way, this fall happened for a reason. I tend to push myself too hard and seldom take time to rest. I often need reminders to slow down because when I’m feeling strong I just keep pushing. My body has been through a lot, and I have worked it hard even through cancer. I am 100% aware (now, if not before) that I need to give myself a break (no pun intended), not put so much pressure on myself, and be grateful for all the things that I can still do.

This is just another minor setback and I have no doubt that I will come back stronger than ever, both mentally and physically. A friend of mine shared this ancient Chinese Proverb with me, because he sensed I was feeling low: “Fall down seven times. Stand up eight.” It’s definitely the story of my life with MS, but I’m so glad he was quick to remind me. It’s what I do, and what all warriors do. As much as I may have wanted to throw my hands in the air and give up about a gazillion (or at least 40) times in the last 14 (+) years, I refuse. It’s not an option. I know I’ll rise, stronger, wiser, and hopefully with more self-love and patience when I get to the other side of this.

Plus, at age 45 I finally can say that I have broken not just one bone but two… at the same time!

Partner

The other day, Bruce turned to me, and asked me why I always refer to him as my partner rather than my husband.  It’s not that he was upset or angry about it, it’s just that he was curious. And looking back at the many blog posts that include him in any way, I do always refer to him as my partner.

I looked at him and I almost didn’t even know where to start explaining. I mean partner encompasses so much more than saying husband or spouse. By being partners, Bruce and I share every single aspect of our life together.

This is the exact spot where Bruce first saw me walking across campus, and last summer we went back to the scene of the crime!

By simply calling him my husband, no one would know that he is my care partner. He is the one I lean on when I’m not feeling well, and he puts everything else aside for me during those times. He supports me physically when I’m not well by picking up my share of the slack around the house while still working full time. He does this without complaint, knowing that if the roles were reversed, I would do the very same for him.

Calling him my husband doesn’t reflect the depth of our friendship, that started when we were just 18 years old. He was my best bud for years before we started dating, and the history we shared during those years made our relationship much more special when we finally did get together. That’s how I knew it was for keeps because he’s still my best friend. He’s the first one I turn to when I need love and support. He makes me laugh so hard that I cry (and maybe even pee a little bit… but that could be MS too!?), and having him beside me, even if we are just sitting in silence, provides me with the kind peace of mind that calms me to my very core.

Saying that Bruce is my husband can’t possibly do justice to the guy who loved me even when my entire life revolved around my job… and even more when I added graduate school to the mix, taking away more time together from the already limited amount we had. Even when we were spending time together, I was always thinking about school or grad school. I was seldom fully present, but he supported me anyway because that’s what partners do.

Being my partner means that he has chosen to continue on our journey together despite the many obstacles we have faced. Being my partner means sharing the burden equally, and that burden can be pretty weighty at times. But when we each take half, it’s not so bad. Bruce wears many hats in our world… best friend, care partner, husband, fiancée, soul mate, and partner.

A reenactment of one of the very first pictures of us, taken in New Hope, PA.

I can’t even remember what it’s like to not have him as my partner, or when his title evolved to partner. What I do know is that having him as my partner in life has made everything better, including MS and breast cancer. Having him as my partner means I smile wider, love harder, and give thanks every damn day that he is there.

The truest sign of our partnership is that we complement each other so that each of us is better because of the other. With all that being said, it is true that Bruce is my husband. But he is my partner in this life, and being my partner entails way more than just being my husband. Plus, he’s the captain of #TeamRankin… and as we all know, #TeamRankin never loses!