Monthly Archives: July 2019

Having it All

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A while ago, I had a pretty memorable conversation with a friend of mine. Actually, it was a text conversation, not a real conversation, but isn’t that the way things go in this day and age?

Anyway, during this conversation, we were casually talking about  love, marriage, and life in general. My friend rattled off a list of things, both tangible and materialistic as well as intangible and meaningful. She said that it’s impossible to have it all. I thought about it for a few minutes, silently taking inventory of my life. I responded that I disagreed with her, because I really do feel like I have it all. Please indulge me this week as I share why I feel this way, truly looking at my life in the glass half full, making lemonade kind of way.

It’s nothing fancy, but it’s dependable and gets me where I need to go.

If we are talking about the material items, I am a simple person. I’ve never been fazed by fancy cars, name brand bags, and other high end merchandise that often impresses some people (although I do love my diamonds!). My car is nothing fancy, but I love it. It’s reliable, comfortable, good on gas, and most importantly, it’s safe. It has all the comforts I could want, and then some. It’s not the make or model of the vehicle that interests me, but rather that it always gets me where I’m going, and I didn’t have to sell any vital organs to afford it.

Over seven years ago, my husband and I moved into the home of our dreams. Since it was new construction, we were able to personalize everything just the way we wanted. We never thought we’d buy a brand new house. But we were smart to buy our first house when we did, we were smart with the updates we made there, and we were smart to sell when we did, which made it possible for us to even consider this new home. It’s not a McMansion, or even a large house. But it’s my home, and I love it. The truth is, I’d be happy anywhere as long as my little family is with me.

Home (really) sweet home!

The hard hat walk-through made it seem like we were a lot closer to being done than it really was!

Still, those things are things we can buy. But the more important things can’t be bought. I chose a career I was passionate about and that I fully believed was my destiny. I loved being a teacher, and I know I was good at it. Some days I had so much fun that I couldn’t believe that I was actually being paid to do it. I connected with my students on so many levels, and I would be incomplete without them still in my life. I wasn’t ready to retire when I did, but I left feeling completely fulfilled by my career. I was at the top of my game, and I never became “that teacher” who stopped giving her all, 100% of the time.

This was the honor of a lifetime.

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

I have awesome friends, in the MS community, and also outside of it. My MS friends are considered my “MS family”, and we support each other through everything. These are the only ones who will ever really get it, because we are all in the trenches together. They are beautiful and strong, and they each inspire me every single day. Without them, my world would feel empty. I am also blessed to have a few incredibly understanding and supportive friends who come as close to truly “getting it” as anyone who doesn’t have MS could possibly be. They read anything they can to learn about MS and how it might affect me, which makes me love them even more because they try so hard to get me.

The best gifts MS has given me is this motley crew. I wouldn’t trade them for anything.

I don’t have children, but I most certainly have a family. I am lucky enough to have an amazing husband who has stood at my side, without wavering, every step of the way. For the past 25 years, Bruce has been on my side, before MS, and now with it. He watched me struggle to recuperate from spinal fusion surgery, and remained my rock through breast cancer. How many people vow to be with their partners in “sickness and health’ and never really know what it means? How many people are actually tested on the strength of their marriage vows? Bruce was. And he is tested daily. But he sees beyond MS and what it has taken from me. He sees the person I have become in spite of it all. He is my laughter, my strength, and my joy. He balances my optimism with his realism and his pragmatic sensibility. We have an insanely happy and healthy marriage, and I never, ever take that for granted. Together with our two “fur babies” we have built a life that I wouldn’t trade for anything.  We still like each other after all these years, and what’s more is that we are more in love now than ever.

I am so lucky to be more in love than ever with this guy who really makes me feel like I have it all.
Photo credit: Idalia Photography

Perhaps it’s because of my simple nature, or even my perspective on life… I have everything I need, and then some. I honestly feel as though I have it all.  My friend said she didn’t think she would ever be able to say that about her life, and she told me that I’m so lucky to feel that way about mine. She’s right.

Summer Fun?

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This summer in the Northeast has been more brutal than any I can remember in recent history. I mean, hooray for all the small businesses at the Jersey Shore, and for all the people that have been able to enjoy it, but for me, it has brought so many plans to an all out halt because I do not function well under these circumstances. Even members of my MS family who are not easily affected by the heat and humidity have been experiencing some level of increased MS-related issues. While it’s comforting to know that I am not alone, it doesn’t exactly help me get through these tough days.

I seldom plan anything when I see a heat wave coming, because I know my limits, and I know how I react to heat. But weeks ago, I committed to something that I really wanted to do. There was a volunteer celebration at Marty’s Place  where I spend time every week if I can. I was super excited to show Bruce around this amazing facility that allows the resident senior dogs the opportunity to live out their golden years in a comfortable home environment surrounded by love.

Marty’s Place resident, Boomer was not so psyched about the heat either!

I eagerly (and anxiously) watched the weather forecast for days leading up to the event, hoping that somehow we’d catch a break, but it continued to be forecasted at 100 degrees, with a “real feel” upwards of 115. My heart sank. It was the ONE thing I really wanted to do and I knew MS would not play nice under those circumstances. The day before the event, I sadly emailed the executive director expressing my disappointment in the fact that I would not be able to attend the celebration. As always, she responded kindly, telling me she understood, and to take care of myself.

As kind and understanding as she was, it did little to appease my resentment towards MS. Even now, more than 16 years after my diagnosis, I have my moments when I want to pout and scream and cry because even though I know those weather conditions are not great for even an able-bodied person, they are actually dangerous for someone with MS. I wanted so badly to be there yet instead spent the day in the comfort of our home, always kept at a brisk 65 degrees. I still resent MS for taking away the choice for me to be able to do the kinds of things I love to do in the summer, but I can’t now, at least not without taking careful precautions (which still doesn’t guarantee I won’t be affected by the heat).

I understand that I am blessed to live in a country where I have the option to just hole up in an air conditioned place, and to many this might seem like a “first world” problem. But when your ability to function depends upon your environment because you do not have the ability to thermoregulate (an autonomic function), you realize that it’s a matter of quality of life more than anything. I am grateful to Bruce and his patience, as well as his love of climate-controlled environments. He is happy to spend the hottest of hot days sitting on the couch watching movies together, even if he is wearing a hoodie with the hood up, long pants, socks, and slippers while I’m barefoot and in a short sleeved t-shirt. He won’t even let me go out to get the mail or take the dogs out because he understands that even while I am inside I am still affected by what’s happening outside. I never quite understood that, and I’m no scientist, but I think it has something to do with the dew points.

My other half, all bundled up in the AC, doing things typical for us during the excessively hot temperatures, while Scarlet looks on.

Because of having to cancel last minute, I seldom commit to things, especially in the summer, because I never know how hot and humid it is going to be… but here in NJ it’s pretty much a part of summer life, and often it’s hotter and more humid here than in Florida for Pete’s sake! And it’s at times like this when I have to temper my disappointment with how lucky I am to have a partner like Bruce, who supports me through it all, without complaint.

I miss the days of my past when I worshipped the heat and the sun, but I have learned that I can no longer enjoy them anymore. I’m allowed to miss them, and even have a brief pity party, as long as I come back to reality in time to count my blessings.

Trade-Offs

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Everyone who has ever known me knows that I am a planner. I used to plan out every detail of my life. I carefully planned out everything, from the very smallest details such as my lunches for the week, to the bigger moments, such as celebrations or get-togethers with my family and friends. When I was diagnosed with MS, my very first thought was that Multiple Sclerosis does not suit my lifestyle. MS doesn’t suit anyone’s lifestyle really, but for someone who maps out her life, it is completely and utterly catastrophic.

Rutgers Homecoming is an event that I love but it is an exhausting day, tailgating before and after the game. It’s easily a 10 – 12 hour commitment!

When MS came along, I was forced to re-think my approach to just about everything. Now instead of planning the minutia of daily life, I found myself always having a “Plan A” and a “Plan B”. For every well-intentioned plan, I always had a secondary plan, “just in case”. It didn’t take me long to realize that if I just “went with the flow” more often, it would be a whole lot less work for me. It was then that I learned that everything in my life is a trade-off.

Because people can’t see my symptoms, they often don’t understand my limitations. On the surface, everything appears as it should. I walk unassisted (right now), and there are no outward signs of my illness. But inside it is a different story entirely. I haven’t felt my left side in over 16 years, which causes me to lose balance, stumble, fall, burn, or even cut myself without knowing it. I go through massive itching fits that can’t be satiated by anything because it’s a neurological itch, and as a result I scratch my skin raw. I have bone deep, aching pain in my lower limbs, which keeps me from getting comfortable (especially at night), so I seldom sleep for more than an hour or two at one clip. There are many other symptoms that I won’t list here, and lack of sleep exacerbates them all. But if you saw me on the street, you wouldn’t know a thing. You would probably even wonder why I deserve a handicap parking spot if you saw me get out of my car. One thing I know for certain is that I would trade looking good for feeling well any day of the week if I had the choice.

My sister’s wedding was amazing! I rested the whole week leading up to it, and it took nearly 2 weeks for me to recover. Worth every second! (photo credit: Idalia Photography)

What I have learned through the years is that for everything I want to do, there is always a trade-off. If I want to plan on a weekend packed with friends and family, I know I need to spend at least 2 days resting up beforehand, and then a week to recover afterwards. If I go grocery shopping one morning, I can’t expect to be able to cook that evening.

At first, this was frustrating beyond belief. I used to work from 6 am – 5 pm, work extra activities at work, go to the gym, go home and eat meals I had prepared on the weekends while still managing to grade papers, write lesson plans, and even be social! But now, all these years later, I am ok with the trade-off. When there is something really special on my calendar, I plan ahead so that I can enjoy it to the fullest, knowing that I will need to factor in recovery time before making further plans. It’s totally worth it because when I do what my body has taught me, I am fully present and able to enjoy every single moment.

It was a big year with both my sister and my brother-in-law getting married. This was another great day that I paid for after the fact. No regrets! (photo credit: Idalia Photography)

The ultimate trade-off is the one in which I traded my old life for one that includes MS. As much as I have begged and pleaded for a cure, I have to be grateful for the many gifts I have been given as a result of my illness. I have traveled near and far, sharing my story to help and inspire hope in others as they adjust to their diagnoses. I discovered an inner strength that I never knew I had, and a passion for finding happiness, even for just one moment, in every single day. I have learned to love harder, and to hate less. Most importantly, I have found an amazing group of inspirational, supportive, and understanding friends that I never would have met otherwise. I absolutely wish there was no MS. But there is, and I wouldn’t trade these precious gifts for anything.

The best gifts MS has given me is this motley crew. I wouldn’t trade them for anything.

Holland

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This week, I met up with one of the few friends I have left who came into my life as a co-worker, and we talked about how five years ago I moved to Holland. Not actually, but metaphorically. In brief (for those who don’t want to read about it from the link), Holland was not in my plans or on my radar at all. I was ready to head to Paris. I did all my research, and I was fully ready to embrace my home in France. I knew all the restaurants in the neighborhood I hand-picked, all the museums and festivals I would go to, and I even started to learn some of the language.

Sadly, after making the trip, I found myself not in Paris at all, but in Holland instead. I had no idea where anything was, where I would live, the different cultural events that would interest me, and I don’t speak a word of the language because I was prepared to be elsewhere. Not that I had an opinion on Holland, just that I hadn’t planned on being there, and I panicked.

This is a metaphor for what I thought my life was going to be versus what it turned out to be. I was happily living my life as a high school teacher, MS and all. I knew that it was getting increasingly harder for me each year to be the teacher that my kids deserved, but never did I imagine such an abrupt ending to what I can only refer to as my calling. I have no regrets for the way I did my job because I don’t know any other way to do it. I was ALL in. Always. All ways. Nothing came before my kids and my school… absolutely nothing: not my husband, not my family, not even my own well-being. It was my identity and I was proud of it. I could have changed my approach but I didn’t know how. Every June on the last day, I would tell my husband that I made it through another one but I wasn’t sure how many more I had in me. I spent 15 amazing years in Paris. I wasn’t ready to go when MS said it was time.

This is just a sampling of the many former students who remain in my life. They all hold their own special place in my heart, and they are the greatest rewards that my career gave me.

So my MS and I moved to Holland. I wasn’t happy to be in Holland at first. Everything seemed so strange to me. I went from having everything scheduled down to the exact time I could go to the bathroom, to no schedule whatsoever. I went from being surrounded by people and activity, to spending more time alone. I went from my identity as Mrs. Rankin, with a clear-cut purpose, to Rennie… no identity and no purpose.

Adjusting to Holland was not easy. But you know what? I began to work on myself, and I began putting myself first. I learned to make a schedule for myself because there wasn’t one for me. I learned to surround myself with the most amazing people who always lift me up and remind me that I am worthy of good things, especially while I was figuring out who I was without being a teacher. Most importantly, I found purpose. It really hasn’t changed, it just shifted to a different audience, even with a little overlap from my old life.

This wonderful metaphor that I learned from my therapist has helped me so much as I have built my new life from the bottom up. I have a renewed spirit, a fresh outlook, and so much gratitude for everything even though life did not go according to my plan.

Not according to plan, yet still moving forward with purpose and a sense of self.

What I am trying to say to anyone who is struggling is that life is meant to be lived and enjoyed, and that reinventing yourself is possible no matter where you find yourself.

As human beings, we need to roll with the punches, knowing that we are capable of changing and growing despite any obstacles we face. We are innately  resilient, even if we don’t realize it right away. When I first got to Holland, I did not think I would ever be happy here. But now, five years later, I can’t imagine myself anywhere else. But I learned to trust in the universe and in my own ability to adapt, which may have been the most empowering part of this whole journey. After all, we can’t rely on anyone for our happiness because then you’re always setting yourself up for disappointment. But believing in yourself is where all of the power comes from.

I am endlessly grateful for the sense of peace I have and the fact that I can fully appreciate the beauty in life.

Before I get too far off track here, my point is that regardless of where you are, true happiness abounds as long as you are open to it. I didn’t expect to be in Holland, but I love it here. I am happier, healthier, and so much more grateful for everything than I ever was before. And you know what? The lemonade here in Holland is incredible, and my glass remains half full, as always.

Bad Ass

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This is definitely not a term I would use to describe myself. I mean I was the chubby kid who was bullied through elementary school and spent more time crying than laughing. My dad’s job moved us from rural New Hampshire to Bergen County, NJ (a very metropolitan area just outside of New York City) at this very crucial time of my childhood. I’m a lover, not a fighter, so I viewed the bullying as something I deserved, and cried over it in the privacy of my own bedroom. That chubby little kid never would have thought that people would look at her as a bad ass for simply living her life the only way she knows how.

Yet in the past few weeks, I have been called a bad ass on numerous occasions, which definitely makes me laugh. I mean I certainly don’t feel like a bad ass. I spend most of my time smiling, laughing, hugging, and laughing. Did I mention I spend a fair share of my time smiling and laughing? I’ve never even been in a fight where I actually threw a punch, though I certainly was pushed around plenty during those early days living in Northern NJ.

Me on the first day of school, slimmed down after a summer at camp.

I’m the rule girl. When I was working, I consistently enforced the rules in my classroom, and I’m afraid that the same attitude bled into my personal life as well. I am still bound to rules more than I’d like, but not working has made it easier for me to let certain rules slide. Still, in my eyes, that makes me boring, not bad ass. Not that I find this term negative… in fact I find it quite a compliment and also very empowering although I am not sure what qualifies me as bad ass.

I mean, I have dealt with Multiple Sclerosis quite openly for over 16 years now. I used my voice as a teacher to educate my students and colleagues, raising awareness (and money) for the cause, with my only motive being a sincere hope that the next generation can live in a world free of MS. I let them see the good, the bad, and the ugly, but I always approached it as my calling to show that overcoming adversity and rising to challenges in our paths simply make us stronger, more sympathetic, and more grateful individuals. Is that bad ass?

Here I am with my “core” MS Walkers (2010), who represented the over 450 members of our team.

I have accepted the brutal cycle that MS is… one step forward and two steps back. I have worked hard to keep my body moving, even through the times of limited mobility and function, because I am determined to stay strong. I have changed my life, my body, and how I look at exercise, fitness, and nutrition, because it takes on new meaning when it’s not about how you look, but rather it’s about how it makes you feel: strong and in control of the only things that you CAN control. Is that bad ass?

Several years ago, I endured a five hour spinal fusion and laminectomy surgery, not because I wanted to, but because I had to. This was not part of what I had imagined my life would be, but I accepted it and embraced it as part of my journey because there was no choice. I worked hard to rehabilitate afterwards and get back to the place where I am most comfortable with my body. I kept moving rather than using it as an excuse to stay still because I needed to take control. Is that bad ass?

My spine and the hardware that holds it together, in all its glory!

The next obstacle in my path was a curve ball, to say the least: breast cancer. I approached it the same way I approach everything in my life. I did what I had to do, never questioning why it was happening to me. I did it with a smile on my face because of the love and support I felt in my heart. In the grand scheme of things, I knew it could have been worse, and it was a huge learning experience for me. I learned about myself and what I am capable of, as well as about the people I surround myself with. Some people live an entire lifetime without having the opportunity to see their own strength and capabilities, which is a true shame since most times we don’t know these things until we are tested to prove them. As difficult as it was, and will be for the next several years, I am grateful to have learned so much. Is that bad ass?

Post-op picture after my lumpectomy and lymph node biopsy: looking blue (literally) from the radioactive dye used to highlight the lymph nodes that were removed.

Then a little tumble down a flight of stairs left me with some broken toes. Compared to all I have been through, this (although totally painful and extremely limiting to my mobility) was nothing. I laughed my way through the visit to the Urgent Care, the x-rays, the doctor’s attempt at humor (I’m not so young that I’m just growing bone overnight anymore and I must not have given enough in the collection basket that week, as this little accident happened on a Sunday), and even laughed at the silly, ugly boot which was an extension of my body for 6 weeks following the fall. It was a small setback in the bigger picture of my life, and I just had to laugh at myself because I can do so many difficult things without consequence, but apparently walking down stairs is not one of them. Is that bad ass?

These are my toes after having been re-set by the orthopedist.

Most recently I embarked upon a 10 month journey to improve myself and to hopefully help others. That journey was the path to becoming a 300 hour certified yoga instructor. I wasn’t the strongest yogi in my class, but my passion rivaled everyone else’s. The more I learned, the more I found myself wanting to keep learning. Most people with chronic illnesses such as MS can appreciate that this was no small undertaking, and I definitely had my share of setbacks (physically) and I also had my moments of self-doubt (and shed my share of tears) during the incredibly intense and overwhelming process. But I have never been one to give up once my mind is made up, and this was no exception. Is that bad ass?

I love being upside down. Headstand (Sirsasana) has so many health benefits, but for me it’s also a literal way of changing your perspective.

My conclusion is that “bad ass”, like beauty, is in the eye of the beholder. I never thought of myself as bad ass, I’m just living my best possible life. It’s funny that I would never label myself as a bad ass, but other people do. I’m fairly certain that the chubby girl who was so often bullied never would have thought that being pushed around by some assholes would seem so small in comparison to the real obstacles that I have had to face as an adult. And even though I don’t exactly see myself as a bad ass, I can guarantee that she sure would.

Yup. My shirt says “FC” and my socks say “bad ass”. If you don’t quite get the “FC” part, let’s just say that the “C” stands for cancer.