Tag Archives: ms family

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.

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.

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.

Diagnosiversary

In preparation for my blog this week, I decided to read what I had written about my diagnosiversary last year and the year before, because I just can’t let June 2 slip by without acknowledging it. I read through the entry, and I realized that on this, the 14th anniversary of my diagnosis of Multiple Sclerosis, I would have written the same exact thing I shared last year (which I shared from the year before) on the topic. The feelings I experienced on that day, and during the weeks and months that followed, are still as raw and as powerful as they were 14 years ago. It doesn’t matter how much time passes, telling the story immediately brings me back to that moment in time, so here’s what I have shared in years past. Nothing has changed about that day, except year 14 has brought many more challenges (like breast cancer… an entirely different diagnosiversary!), but it has also brought many more rewards for which I am grateful every single day. 


This is the sign that marked my 14th radiation treatment, and I think it is a perfect representation of how I feel 14 years into my journey with MS.


June 2 is a very special day for me. It’s a random day, and it probably means nothing to anyone but me (and possibly my husband). It’s an anniversary that does not celebrate a milestone or an accomplishment, but June 2, 2003 is a date that I will never forget. On that day, I was given a diagnosis that undoubtedly has changed the course of my life.


Every year on June 2, I am brought back to that day, now [fourteen] years ago. I relive the details of the day moment by moment. I remember what I ate for breakfast (oatmeal), and I remember what I was wearing (white and blue plaid capri pants, a blue button down shirt, and white and blue sneakers). I remember stopping at Dunkin Donuts for a large iced coffee (black) on the way to school. I remember the panic attacks. All. Day. Long. I remember that I had permission to leave after my last teaching period so that I could get to my appointment on time. I remember that my appointment was at 2:30, and I remember that Bruce took a half a day so that he could go with me.


So we got in the car, not talking to each other at all. On the way to the neurologist appointment, we stopped at the radiology office to pick up a copy of the MRI results, just in case the doctor hadn’t yet received them. They kindly folded the paper and put it inside an envelope. In the elevator up to the doctor’s office, Bruce asked me if I was going to open the envelope. Without hesitation I said no way. I knew I wouldn’t understand what was written there, and why not just have these last moments together before the inevitable?


We sat in the doctor’s office, staring at each other, waiting for for him to deliver the news. We didn’t talk. I was too busy having one panic attack after another to even attempt a conversation. After what seemed like an eternity, we finally heard his footsteps approaching. We heard him pause outside the door, and we heard him pull my chart out of the bin outside the room. Then, to our complete and utter shock, we heard him let out a huge sigh, before knocking once and entering the room.


The doctor walked in, greeted us, and told us that I have Multiple Sclerosis. From that moment on, it was as if I was watching someone else’s life unfold. I only heard bits and pieces because my mind began racing. To be fair, I was not yet educated on MS, but at that moment, it felt like I was given a death sentence. We know now that MS is fatal in only the rarest, most severe of cases, yet there was a part of me that did, indeed, die that day. The road ahead of me required a complicated detour that I was not sure I could even navigate.


We left the doctor’s office in a total daze. Suddenly we were occupying space in a world that was completely different for us, yet for everyone else it was unchanged. In this drastically different world, what did we do? We went to Target. I guess we were searching for some sense of normalcy in this new, unknown world of ours. We sat in the car afterwards and called our families to share the news. It wasn’t exactly the kind of news I looked forward to delivering, but at least I finally had an answer. After months of appointments, X-rays, MRIs, blood work, evoked potentials, and cognitive and neurological tests, I was done. It’s not what I wanted or expected, but it was something. The phone calls I made on June 2, 2003 were some of the most difficult conversations I have ever had in my entire life.


Following my diagnosis, Bruce and I holed up at home, and didn’t speak to many people other than each other. Some friends called to offer support, and others dropped off the face of the earth. All the relationships in my life were tested, and certainly the dynamic within them shifted. I learned a lot about my friends, and mourned the loss of many who did not know how to deal with my diagnosis. Sadly, this happens with every relapse, but [14] years later, my coping mechanism for that kind of loss has been fine-tuned, and I have built a support system that holds up.


On this day every year, I take inventory of my life since diagnosis. It has not been an easy journey, but it has been amazingly rewarding in so many ways. Since my diagnosis, I have learned that I am stronger than I ever imagined I could be. Everyone has an inner strength, but not everyone realizes it because you don’t summon that strength until you need it. I have discovered my voice to educate and to raise awareness, and my passion for patient advocacy. These are integral parts of who I am, and without MS I don’t know who I’d be right now. One thing I know for sure is that on my diagnosiversary, I always give thanks to the powers that be for all of the parts of me that MS has made better, and for all the things I am still capable of doing despite the MonSter.


For [14] years I have acknowledged the importance of my diagnosiversary, and this year is no different. I’m still grateful for the many gifts I’ve been given, and even though my journey has not always been an easy one, I know that every bump in the road makes me a stronger, better version of myself. I don’t celebrate the anniversary that falls on this day. I celebrate all the things that I have managed to accomplish, all the things I can do, and all the things I am, MS and all.

#LifeWithMS

Wednesday, May 31, 2017 is World MS Day. On this day more than any other day of the year, I stand in solidarity with my MS brothers and sisters, each of us doing something in our own individual ways to help raise awareness of this often invisible, consequently overlooked, incurable illness. This has become a powerful movement in recent years, and the theme this year is #LifeWithMS. In honor of this theme, I am sharing my thoughts on the matter, as always,  hoping to impact as many people as possible, whether they suffer from MS, have loved ones who do, or who don’t know anything about #LifeWithMS.
First of all, Multiple Sclerosis does not discriminate. Not by race, ethnicity, gender, socioeconomic status, sexual orientation, or otherwise. No one is immune or exempt from the possibility. Although most people are diagnosed between ages 20 and 40, there are no rules and it can happen way earlier or way later. Additionally, having MS does not preclude anyone from being diagnosed with other serious conditions… a fact I always knew but learned first hand having recently completed treatment for breast cancer.

My #LifeWithMS has taught me so much about myself, my friends and family, and the world in general. Because the vast majority of my symptoms are invisible, I find that I am treated very differently than the MS patient who relies upon a walker or a scooter because those are devices the whole world can see. My experience with my sisters and brothers who rely on assistive devices for ambulation is that generally other people are kind and considerate, and amazingly helpful because they can see that there is something wrong. I am generally not afforded the same consideration because looking at me, most people wouldn’t know I have anything wrong with me at all (but my therapist knows the truth!). In fact, I often get the evil eye when I pull into a handicap parking spot, and have even been questioned about it by perfect strangers. I have been dealing with this for a long time, so I no longer feel the need to engage with others or defend the fact that I am, indeed, disabled. The office of social security, the motor vehicle commission, my doctors, and the state of NJ all acknowledge it, and all these years later I don’t really give a crap if a random busy body watching me park my car does or not because I’m too busy trying to live my very best #LifeWithMS.

My point is that just because you don’t see something, it doesn’t mean that it isn’t there. I mean we can’t see gravity, but I assure you it’s there, and I don’t think anyone would argue that. So am I supposed to present an enumerated list of my symptoms to all who meet me so that they know that I suffer on a daily basis? And I do suffer from many difficult to manage symptoms, yet I always hear the dreaded “but you look so good!” My internal response is always the same: Damn… I am a great actress! (or else I think and you don’t look dumb, but you are!)

#LifeWithMS includes managing crippling fatigue, deep neuromuscular pain, bladder issues, “painsomnia” (self explanatory I hope), neuropathy (numbness, tingling, weakness, lack of coordination) on my entire left side plus my right foot, insatiable neuropathic itching fits that have left me raw and scarred all over my body, constant vertigo, muscle spasms in my legs and intercostal muscles often known as the “MS Hug”, and the list goes on and on. But when you see me out you won’t know it, because I am an actress and an optimist, and if you tell me I look great, I’ll gladly take the compliment, secretly so grateful that you don’t see me on the worst days when I can’t even remove myself from the couch.

Staying strong is my MO.

My #LifeWithMS revolves around taking care of me, and I am fortunate that I am in a position to do so. I exercise faithfully, eat well (but not without my cheat days), and I meditate. The only thing predictable about MS is its unpredictability and as such, the things I do are the only things that are within my control, and staying strong (both physically and mentally) is my only weapon.

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.

Of course, I can’t talk about my #LifeWithMS without talking about the incredible support system that surrounds me. I have a devoted partner, a loving MS family, a handful of beautiful friends who have stayed the course with me, and some very special family members as well. Without all of these awesome members of my team, I would be a very different person.

The most important member of my support team is this guy right here… he is my everything.

The take-away for today, the thing I most want to emphasize is that #LifeWithMS is no less worth living than life without it. I still smile endlessly, laugh without abandon, and love with all my heart. But more importantly, I am infinitely more grateful for who I am and all that I have. MS or not, life is what you make of it, and as for me, I prefer to sip lemonade over sucking lemons. Don’t you?

My MS sisters. They are absolutely the best friends I could ever ask for.

Perspective

This past week I had a few rough patches. One day I found myself telling my MS family, and they all offered me comfort in the same loving way they always do. I thanked them and told them it was all good because tomorrow is a brand new day full of possibilities. Then another day, as we all checked in with each other via text, the norm on days when we don’t see each other, I found myself when asked how I was doing, responding that I could complain but I don’t. It’s not an act or something I put on in front of people, but rather absolutely the true and honest way I live my life.

(MS) Family is everything. My girls, my sisters, my angels. They saved me and showed me how to live as Rennie.

Every day when I sit with my journal and write my gratitude list, it seems to get longer and longer. Obviously I am grateful for the most amazing husband and partner, and the life we have built together. But beyond that, I’m grateful for things most  people don’t even think about… the perfect spring day photo field-tripping with my photog buddies, an awesome workout when my trainer says things like “MS? What MS?”, a body-encompassing hug from the ones I hold dear, doggy kisses (even when I’m frustrated about cleaning up another poop in the house), and even despite MS and breast cancer, I am so incredibly grateful for my health. It is precarious at times, but I have learned to slow down and nurture it, my relationships and how they have changed as a result, and the family I would never have found if I had perfect health!

My sneaky friend Marlene caught me thoroughly making the best of the photo field trip “barn tour” we took last week.

It’s so unfortunate that many people are never given this kind of eye-opening gift… one that comes from a difficult life circumstance but makes you see everything differently. I was that person until MS forced me to give up my beloved career. And even then, it has taken me years of processing and learning how to accept myself in this new light. I genuinely feel lucky for the gifts that I’ve been given through an experience that was the hardest thing I ever had to go through. I will never, ever regret the passion, energy, sleepless nights, and endless piles of work that made me Mrs. Rankin, the teacher, because I have so many beautiful people in my life because of her.

Mrs. Rankin with some of her all-time faves at their very last Walk MS before graduating.

But Rennie, the human being, has learned how to be satisfied with her best effort and she is not (quite as) obsessed with being perfect. She appreciates every moment of every day, whether she is spending time with former students, friends, and family, or spending the day cuddled on the couch with her pups. This girl knows how lucky she is that she has the opportunity to take care of herself how and when she needs without losing sight of that because she always took care of everyone and everything job-related before anything else, including her own wellness. She always sought work/life balance but she just couldn’t make it happen. Nothing could. Except MS.

Yoga has definitely been something I have leaned makes me feel better, and has also helped me get to know who Rennie is. I’m far from perfect, but it is called a practice for a reason!

Fighting a battle against MS is not easy, and certainly made harder when breast cancer was added to the mix. But again, I learned so much about who I could count on as part of my “ride or die” team, and also about myself and my own priorities. What I know for sure is that every single day is a clean slate and offers a whole new set of opportunities for each and every one of us. Instead of dwelling on what I miss about being Mrs. Rankin, I look at how much better it is to just be Rennie. I mean, my students are still growing up in front of me and doing some massively impressive stuff. And I get to experience it totally differently because I am Rennie. I don’t have to wake up at 4:45 in the morning and be within the confines of a classroom to continue my work as a teacher. I can really enjoy nights and weekends without the pressure of the job constantly weighing in the back of my mind.

New possibilities every single day…

Now I’m not saying I was miserable when I was Mrs. Rankin because that would devalue everything I did to be the teacher I was. I loved every second of it, but I just didn’t know how much more I could love life. And I do. I take nothing for granted because there are no guarantees ever.

Life with this guy since I stopped working just keeps getting better and better.

These days I’m smiling a whole lot more, laughing out loud (often boisterously and without fear of being stared at), and definitely loving those who have stayed the course with me much more deeply than ever. Unfortunately, sometimes it takes a scare of epic proportions to gain the kind of perspective we all need to live a genuinely happy life. I’ve definitely had my share of these “scares” and oddly enough, I am happy that I have, because I am a better person, in a better place than I ever thought possible.

Self-Acceptance

This week, as I often do, I had lunch with my friend Mary. We like to talk about things that come up through our journaling. We both see ourselves as human beings striving to evolve and become the best possible version of ourselves, and neither one of us is afraid to make mistakes along the way. After all, without mistakes, we can’t learn and then we stop growing.

My Mary. I just adore her! This was taken at one of our lunch dates.

Our conversations always make me see things differently, or sometimes even more clearly. Shortly after our lunch, Mary called me and wanted to share a thought she had, which ties right in to what we had talked about at our lunch. What she had to say was this: as human beings, we need to make a conscious effort to be as kind to ourselves as we are to others.  Think about that. I mean, I never waste an opportunity to help someone else or offer a kind word when someone (even a complete stranger) seems to need it. But I am not that kind to myself. Why is it so hard?

Earlier in the week, Mary also said that we should all be grateful for the bodies we are given. It is up to us to treat it well and take care of it, no matter how it functions or what it looks like. When I thought about both of these comments that Mary made, I agreed with her 100%. Then I got mad at my younger self… the girl who put too much pressure on herself, beating herself up for not matching some unattainable societal standard, and who never treated herself with kindness. Not ever.

It took a career-ending relapse and finding the right people to walk (stumble, scoot, or rollate) beside me on my journey to discover this lesson, and it’s value is far beyond measure. Some people live an entire lifetime without learning it.

I have always abided by the “kill them with kindness” rule, but why is it so hard for us as human beings to be kinder to ourselves? Instead of getting angry at myself these days for not accomplishing something I may have set out to do, I thank myself for allowing my body to rest when it needs it, and that itself is an accomplishment because I haven’t always been able to do that.

The body is just a shell. The good stuff is inside. I mean think about an M&M. The crunchy part is ok… it comes in many different colors and sizes, depending on the kind of M&M it is.  But what’s really the best part? The inside. Chocolate, peanuts, almonds, crunchies, peanut butter, or whatever other good stuff they choose. I understand this now.  I treat my body well. I nourish it, exercise it, and even allow it to rest because regardless of what it looks like, it’s the only one I’ve got and I’m doing everything I can to be kind to it. It’s not perfect according to the image set forth by the public’s standards, but it’s mine, and it’s getting stronger all the time. Under the surface I am fighting two wars right now. MS and breast cancer, and it hasn’t let me down…. because I accept it, work on it, and am kind to it.

Mary issued a challenge to me. I have never been comfortable showing my arms in any sleeveless top. I am a broad-backed girl, and I always have been. My shoulders are wide, and my arms, though muscular, do not make me feel lady-like at all. I’m not what you would consider dainty, and in fact, I have always felt more like a line backer than a lady because of it. I have an array of little sweaters (both short and long sleeved) that I wear on top of any sleeveless top or dress, and I would never, ever take them off. Mary challenged me to get over it and just be me. So what if I’m not perfect because I am perfectly me.

I’m not kidding about the many different sweaters in all colors, weights, and sleeve lengths, that I wear over anything that shows too much arm!

I have to thank Mary for this (plus about a million other things) because she made it seem so simple. She said that even if I just start out by wearing a sleeveless top, getting in my car and driving around the block, it’s still a start. She’s right. Why should I be so afraid of something so simple and so frequently done without a second thought? The answer is this: I shouldn’t be. Now I’m not saying you’ll see me showing off my guns on a regular basis, but what I am saying is that I am going to make a concerted effort to rise to Mary’s challenge. And while I might not feel comfortable with how it looks, I will be proud of myself, inside and out, because I should. I am done beating myself up about the crappy candy coating. Let’s just get down to the good stuff inside.

Countdown

As I sit and write this entry, I have completed four weeks of radiation therapy for breast cancer with just two weeks left to go. It’s amazing that I have come this far already, because while I’m going through these daily treatments, it has seemed to last forever.  But my perspective has changed today because I’m way more than halfway there, and I can hear my trainer in my ear. She usually says things like, “you can do anything for 30 seconds!”, and in the scope of things, the two weeks that are ahead of me are equivalent to 30 seconds after everything I have been through since my biopsy on December 23. 

Has it been easy? Certainly not. But I have learned so much in this relatively short time frame. First of all, I have met so many amazingly kind people who have treated me with such love and care. They innately understand that cancer, regardless of type or stage, is a huge emotional (and physical) burden for the patient, and I feel exceptionally well cared for. 

I have been counting my treatments from day one, simply by taking a selfie, indicating which treatment I was on. Anyone who knows me knows that I’ll be photo journaling this entire experience…. because, well, that’s what I do! For the first week, I simply counted on my fingers. Then I realized that I couldn’t take a selfie while holding up both hands, so Bruce and I came up with the idea of making little signs indicating which treatment I am on. Then the most amazing thing happened. My incredibly sweet MS sister shared this on Facebook: 

All of a sudden, loved ones near and far started claiming numbers… and when I take that selfie with their number, I feel their presence, love, and support. The little signs I made for treatments six through ten were just larger sized index cards that I colored on. And it really doesn’t matter to me whether the signs made for me are simple clip art or elaborate paintings. The point is that it all came from the heart. This simple gesture has made me feel like the luckiest girl ever because I am surrounded by so many people who truly have my back. 

These are the simple signs I made by myself before everyone starting jumping in and claiming numbers!

This is just a sampling of what people did for me.

When I walked into the cancer center one day last week, the receptionist told me that she thought she was the happiest person in the world until she met me. I responded with, “what’s not to be happy about?”, and then we both agreed that life is pretty damn good.  

Everyone’s journey is different, and mine has had plenty of detours for sure, but I still wouldn’t change it. I have the best partner in the world who never waivers in his support for me, plus a whole network of friends that are more like family and family members that are more like friends who have stood by my side through it all. 

This one is especially meaningful for me because one of my MS sister’s sister, who I have never even met before, really wanted to make it. She is 15 years breast cancer free, and #15 marked my half-way point.

Now that I have already come two-thirds of the way, I can see the light at the end of what has felt like a never-ending tunnel. It’s hard to believe that when I post this entry, radiation therapy will be done within just ten (10!) days! On Friday, April 7, I will take my last treatment, and ring the symbolic gong in front of all of my favorite people. On April 10, it is my 45th birthday, and I get to start a whole new year of my life with all of this behind me even though the journey has been quite an education. I am all about starting fresh with a bit more perspective and a whole lot more gratitude. Most importantly, I can say cancer…what cancer? 

I intend the ring the shit out of this thing on April 7!

 

Gratitude

Being that this is the week of Thanksgiving, I am approaching the blog differently this time. I never need a reminder to be grateful for something…anything (!), no matter how small, every single day. If you are not able to do the same, then I challenge you to keep a gratitude journal in which you document something for which to be grateful each day. You might be surprised at what you come up with. So here are some of mine, in no particular order:

  • I’m thankful for my rock, my partner in crime, my other half, my biggest cheerleader, my best friend, my love. He’s the yin to my yang, the pen to my paper, and the vim to my vigor. Bruce supports me on every step of my journey, and works hard so that I can focus on doing the things that keep me strong and healthy. Without him I’d be lost and hopeless. 
  • I’m thankful for my family, whether biological, steps, in-laws, or MS. However they became my family is unimportant because they are always there to see me through the dark moments and show me the light. 
  • I’m thankful for my tripod: my two best girls who have loved me from the moment we met, and who really are the other two legs of my tripod. Without them, I would never be able to stand up straight. 
  • I’m thankful for my adorable rescue dogs who always show me unconditional love. They provide me with so much joy and watching them rehabilitate from scared, skittish, and sometimes even aggressive with the right kind of love and affection makes us all better beings at the end of the day. 
  • I’m thankful for my many, many former students who are constant reminders of the career I loved but had to abandon far too soon. They inspire me with their accomplishments, and they fill me with a pride like no other I have ever felt. 
  • I am thankful for living in a time where medical research is constantly being done to create new treatments to help manage an incurable illness. 
  • I’m thankful for a medical team that listens to me, is honest, and truly cares about me not only as a patient, but also as a person. Our relationship spans 13 years and they really are family to me.  
  • I’m thankful for the seasons of the year because each one is special to me for different reasons, but each one reminds me of how fortunate I am to be able to experience them all.
  • I’m thankful for a roof over my head and food in my refrigerator. Where we are today is so amazing, especially when I think about the tough days early in our marriage where food shopping was often done in my mother-in-law’s pantry. 
  • I’m thankful for the best qualities I inherited from the generations before me. I have my dad’s work ethic (not to mention curly hair), which made my career as successful as it was. From my beloved grandfather I inherited an open heart and an ability to love so fiercely, with every fiber of my being. Last, but certainly not least, I am blessed with my grandma Ruth’s fighting spirit and quick wit. She was at death’s door and bounced back too many times to count, and we often joked that she had nine lives. This quality is the one that I depend on most these days, and I am lucky to have inherited it. 
  • I’m thankful for this body that my spirit occupies, even though it is far from perfect. Under the surface there is a storm brewing, but I still feel stronger and healthier than I have in a long time. I will never take this body for granted no matter what it looks like because it’s just the shell of who I really am. 
  • I’m thankful for the technology that allows me to find support from friends and family at any moment, with just a single text. I’m also thankful for the aspect of social media that has allowed me to connect with loved ones from so many compartments of my past. We may not talk all the time, but I am comforted by their presence nonetheless.
  • I’m thankful for my nephew, Lucas, for always making me laugh and smile. At just 20 months of age, he makes it impossible for me to be in a bad mood, and I can’t help but feel optimistic about the future when I see that little smile, hear that giggle, or feel his little hand in mine. 

As you can see, I am never at a loss of things to be grateful for. This list is just a tiny peek at what I really feel, because I could keep on listing more and more. The point is that we shouldn’t need a day like Thanksgiving to be reminded of all the things around us that make us feel grateful. Gratitude is as important in my daily life as breathing is. None of us can control how much life we have left to live, but we can most definitely control how we view the days we do have. Being the staunch optimist that I am, some might say that being grateful comes easily. I, too, have my struggles, though. Although we shouldn’t need a day like Thanksgiving as the impetus to acknowledge the things we are grateful for, whether facing a chronic illness such as MS or not, we sometimes need a little push to help us look beyond the daily grind we often find ourselves trapped in. I make a conscious effort every single day to remove those blinders so that I can see all of the amazing blessings that fill my life. You should do the same. 

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