Tag Archives: support

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.

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!

 

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.

Lemtrada

On a daily basis, I don’t think much about MS. I mean, I know it is there, but 14 (+) years in, the symptoms are generally manageable but more of a nuisance than anything else. I don’t feel sick because I have been adjusting to my new normals for so long. Usually those norms become a part of who I am: neuropathic, off-balance (read: clumsy), unable to sleep, and tremor-y, just to name a few.

But last week the vertigo hit me from out of nowhere and I spent four days crawling around my house. I needed to take care of things on the homefront, and crawling was a better option for me since I was closer to the ground which meant a shorter distance to fall.

Normally I wouldn’t even think about calling my neurologist because I always think these things are just par for the course living life with MS. And even though I know the rule of thumb is generally that your neuro should be informed of any “new” symptom that lasts more than 24 hours, I seldom listen (insert judgements and “shame on yous” here). I asked my MS sisters if they thought I should call, and they responding with a resounding “DUH”! Ok so they didn’t say duh but they did tell me what I needed to hear.

I saw my doctor emergently just one day later. I have a great relationship with him and have been seeing him almost as long as I have been diagnosed. It will be 14 years in November. So usually my bouts with vertigo have been “positional” which basically means it only happens when I am sitting, standing, or laying down in certain positions. This is NOT MS. But when the vertigo is constantly present, then for sure it involves activity on the brain stem. It also causes utter nausea, and I have been walking around with what feels like vomit at the top of my throat ever since this started. Once we established that MS was indeed the culprit, he looked at me, as serious as I have ever seen him, and said, “Rennie. We need to talk.” I knew what was coming yet held out hope that magically he would have a brilliant solution for me.

Since corticosteroids make me crazy, this is the solution for immediate treatment of the relapse.

What he told me was the following: “Gilenya (the disease modifying therapy (DMT) that I have been taking since clinical trial ) is clearly no longer working for you.” I have seen writing on the wall for a long time now, but I still felt like I had been punched in the gut as the color, I’m sure, drained from my face. I know my situation. I have failed on every single DMT out there. Except two. I am precluded from taking the one I had been waiting for as it progressed through clinical trials, due to my recent battle with breast cancer. That leaves just one more option: the one I have called “the big gun” since before it even came to market in November of 2014.

Gilenya has been good to me and I am very sad to say goodbye.

While Lemtrada (Alemtuzumab) promises great results, it is not without risks. Scary ones. There are pre-medications and post-medications, not to mention monthly blood work for at least 6 years after the first infusion. In simple terms, Lemtrada is an antibody that works by depleting certain white blood cells, partially responsible for immunity. Since MS is thought to be an autoimmune disease where the body mistakenly attacks the brain and central nervous system, the theory is that depleting the culprits allows the body to repopulate with healthy cells that have no memory of their previous programming, thus potentially reducing (or even stopping) MS activity.This means that I will be even more vulnerable to secondary infections and illnesses while my immune system works to re-build itself. The thought of wearing a protective mask and explaining to my two year-old nephew why I can’t hug and love on him the way he’s accustomed to breaks my heart. Plus, if it doesn’t work, there are no more options out there for me, and they still haven’t done research on which, if any existing treatments, would even be safe after taking Lemtrada. That, for me, is the scariest part.

This is just the first bit of literature I have been given, and I know there is plenty more to come.

But if there is one thing I have learned from MS, it’s that I can’t be scared for the future. I need to focus on the present. For me, there is no decision to be made because even though I complement my traditional treatment with alternative ones, not being on treatment is simply not an option for me.

Essential oils and a chakra bracelet help keep me balanced.

As I have done for the past 14 (+) years, I will do what I always do: Pick myself up, put on my big girl panties, and do what I need to do to in order live my best, most productive, and happiest life. After all, isn’t that what everyone aspires to? Plus, I still have plenty of fight left in me, and I am far from done!

Enough

Recently I was introduced to a book that changed my life. First I listened to the audio version, which is generally what I do. But I found the book so powerful on so many levels that I actually bought it. Now it’s full of notes and highlights because I have read it over and over, and no matter where I open it to, I find something useful. It’s called “I Heart Me (The Science of Self-Love)” by David Hamilton, PhD.

I am enough!

(Disclaimer: I have nothing to do with the publishing or creation of this book, nor do I receive anything for endorsing it!)

Basically, the book explains that self worth is about biology and is in our genes, yet somehow we lose sight of it as we navigate our way through life. We seek validation from others, but our worth is within us when we reprogram our brains to acknowledge it.  In essence, the book helps us understand ourselves, learning to be truly authentic and happy, with the goal being the ability to say “I am enough” and truly mean it.

The phrase “I am enough” has become part of my daily intentions (or mantra). Every single day when I write my intentions in my journal, I start off with that phrase, even if I didn’t mean it when I first started doing it. But part of reprogramming our brains, according to Dr. Hamilton, includes repetition of this phrase because eventually we become fully aware of it and we believe it.

Thinking about what my blog would be this week, my MS sister (who actually introduced me to this book) suggested talking about all the reasons that make me feel that “I am enough” even though people with chronic illnesses often can’t recognize these things in themselves for a multitude of reasons.

For example, many of us don’t work because we are on permanent disability. For someone who identified herself first and foremost as a teacher, when I stopped working it was hard to see that “I am enough” when the thing that most defined me was no longer a part of my life. But my legacy remains and because I am still surrounded by so many young adults who have been a part of my life since they were just teenagers, they remind me that I am enough.

This guy right here is just one of the many former students who remain constants in my life. #blessed

This book also taught me that I don’t need people to like me in order to be enough. I spent so many years putting other people before myself and I thought that doing more for them meant they would like me more, and therefore I would be validated. The truth is that validation comes from within and while I love doing for others, I don’t need to in order to be enough. Narrowing my circle of friends to those who truly love and appreciate me is so much more empowering, and no matter how much or how little I give them, I know that I am enough.

These friends never make me feel like I am not enough. #mssisters

As a perfectionist, I was never happy unless I achieved perfection.  This happened in all aspects of my life. Reading this book made me see that I need not be perfect in order to be enough. I learned that only I could see what I perceived as inadequacies and faults because I was the only one holding the microscope up to myself. As promised in this book, moving forward with self-love made the perfectionism fade. I’m not saying I have overcome it entirely but I’m a whole lot better than I used to be.

Perhaps one of the most important lessons that Dr. Hamilton taught me in this book is that I don’t have to look a certain way or be a certain size in order to be enough. Body image has long been an issue for me, and learning to love my body no matter what size or shape, without shame, comes slowly. I had to learn to think outside the stereotype I felt I needed to live up to, and instead focus on the many things I do to keep myself strong. Opinions are subjective and I might not fit anyone else’s ideal, but I am 100% me. Comparing to anyone but myself resulted in an unhealthy feeling that lead to never feeling I was enough, and I am.

It doesn’t matter what i look like. Whether heavier or thinner, I am loved. Sure, I like being thinner like I am now, but I face a lot of obstacles, and regardless of my size I am enough.

Allowing my vulnerability to show has also given me great strength. There is something very liberating about baring one’s soul, and other people appreciate it even if they can’t quite identify it. Vulnerability includes being honest and authentic with ourselves and others, and only then can a true connection be made. Even though we could get hurt in the process, it’s worth it because we learn that even though we are raw and sometimes flawed, we are still enough.

But by far the most valuable lesson this book taught me is that I need to be as compassionate, forgiving, and understanding with myself as I am with others in my life. We are always quick to comfort others when they feel they have made a mistake, but we don’t offer ourselves the same courtesy. I deserve compassion. I deserve forgiveness. I deserve understanding. I am human, too. And I am enough.

Bru always always assures me that I am enough.

This book was no ordinary book for me. What I learned is that it’s very liberating to go through the process of accepting that I am enough. In every way. If you are ready to learn how to accept yourself as enough, the minutia of daily life that normally makes you feel inferior, no longer weighs you down. The progress I have made has not been easy nor has it come quickly. But every day I am making steps to be the truly happy and authentic me that is just waiting to make her appearance. I am not sure the version of me that first listened to this book would even recognize me now, and I’m not even done yet. In the meantime, I can rest comfortably knowing that I am, indeed, enough.

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.

Forever Friend

I have always been of the mindset that I don’t need oodles and oodles of friends. I just need a few loyal friends with whom I have a deep connection. Some have come and gone through the years, as life happens. And it isn’t the quantity of friends that I hold dear, but the quality. Through all the ups and downs of life, I am blessed to have a very special “forever friend”, a name she coined for us back in the 1990’s.

Us… circa 1993

Meg and I went to high school together, but that was just the beginning of our friendship. We also worked together and we spent most of our waking hours together. We spent many hours driving around in her car (usually), car dancing, smoking cigarettes, or just hanging out. Beverly Hills 90210 was a given that we would watch together, and some of my most vivid memories center around those times. Of course, we got into our fair share of trouble together, but we were young and we were not tethered to much more than each other.

With my beautiful “niece”, Peyton.

We connected on so many levels, not the least of which was our shared socioeconomic background and the roles that our parents played at various times through the years. It seemed that no matter what I was going through, she could relate due to her experiences, and vice versa. Sometimes there were little gaps of time when we were both too busy adulting that we didn’t see each other as often, but when we did, we always fell right back into sync like no time had passed at all.

We survived our hormonal teens together, our crazy college years, and even the brutal years of trying to start our lives as adults. We have been there for each other through multiple divorces (in our respective families) and the inevitable drama that ensued, our family homes being sold, moves out on our own, medical issues, and about a gazillion other things. No matter where I am in my life I know that I have my forever friend who has loved me longer and supported me harder than just about anyone else in my life.

Even though life happens and we live farther away from each other than I would like, we still try to get together as often as possible. I absolutely love the way we have grown together even while not living 10 minutes from each other like back in the day. For example, we are both very fitness minded, and Meg has recently become involved in Spartan races. I find it more than coincidental that competing in a Spartan Sprint has been a goal of mine for quite some time, as a way of acknowledging my 15th MS diagnosiversary next year. I discovered that there is a race on the exact day (June 2, 2018), and when I mentioned it to Meg, without hesitation she signed up right along with me. And even though she will have already completed the “trifecta” by then (a sprint, a super, and a beast all in the same year), she is still willing to dial it back as I compete in my first. What’s more, she said it will be her best race ever. I can’t think of a more perfect way to acknowledge this date than with my lifetime friend who knew me before MS, before spinal fusion surgery, and before breast cancer, and who has been by my side through it all.

Proof. We are doing it together.

Megan is loving and kind, thoughtful and compassionate, selfless and sweet. I could never ask the universe for more in a person who I have leaned on so heavily for the better part of the last 30 years. She can still read me like a book, without even seeing my face, and friendships like ours don’t come along very often. In fact many people live an entire lifetime and never get to experience what it’s like to have someone like Meg to call their forever friend.

I remember vividly a session with my therapist long ago, when I first stopped working and was feeling abandoned by so many people. She told me that day that people come into your life for a reason, a season, or a lifetime. With Meg, there has never been a question as to where she fits for me, because she is the only person in my life who actually defies that saying. Megan came into my life for a reason, has endured the seasons with me, and will remain in my heart and soul for the rest of our lives.


(P.S. I know Meg is happy as can be right now because I have not included any incriminating photos and that we were young and free before the digital age!)

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!