Tag Archives: support

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!

Truth

Years ago when I was still a teacher early in the blissful years of my tenure at the BORO, I thought I had died and gone to heaven, having landed there after a difficult three years teaching elsewhere. I started as a long term substitute in a North Jersey high school, where I basically saved their rich asses from much parental outrage when an existing Spanish teacher left the district in a lurch with basically no notice. As such, and because the kids were used to not having a “real” teacher for so long, they really ruled the roost. I was cursed at, disrespected on a daily basis, had items thrown at me, and I had very little support. I knew that I was not meant to stay there because I felt that despite my lack of actual classroom teaching experience, I did my very best with what I was given. I then took a tenure track position closer to home, which I thought would be perfect for me. This new district referred to itself as a “suburban school with urban tendencies.” Translation: teaching in an inner city would have been a better idea. But I stuck it out for a second year because I thought it would make a difference having made a mark during my first year there. Yet even then, little discipline was handed out when students discussed my ass in front of me, or when they made me cover the auto shop where I heard things that no teacher should hear from the mouths of adolescents.


When I found my new home, word spread quickly, and the district retaliated against me because they heard that I was leaving. They were angry because I was heavily involved in advising extra and co-curricular activities, and all they could think about was filling my shoes. I was given a final evaluation that was disgusting and filled with lies, all without a single supervisor or administrator ever stepping foot inside my classroom. It hurt my ego even though I knew the truth but I took comfort in the fact that I would be moving on come the following September.


Then came the BORO, my beloved home away from home.  I thought for sure I would end up teaching the rest of my career there, which I did, even if it was cut short due to MS. A few years after I started there, we were blessed with a new school psychologist, who in my mind had always been an under-used resource, because I never in my teaching years before that, had ever met a school psychologist that had such a similar philosophy on our students than Dr. Brett Holeman.

The best of the best right here. I challenge you to find a more dedicated, compassionate, student-focused school psychologist anywhere. Go ahead and try! You won’t find it. He is truly one of a kind.


From day one, we connected because of the many students that we worked with together. While I always had great relationships with my students (even the ones that everyone else hated), I knew I was not qualified to handle many of the issues that result from the difficult life circumstances that our most at-risk students dealt with on a daily basis. I leaned heavily on Dr. Holeman for advice on how to handle specific students and circumstances, because after all, he’s was the doctor. I was just a classroom teacher. And a damn good one, too.

Both Brett and I believed (and still do) in the wellness of each student, inside and out. Each student was (and is) a complete individual with human necessities that include feeling safe and secure, and having an outlet for talking about the things that are not measured on data-based or high-stakes testing. Each student represents more than the dollar amount spent on their education, but rather a human being needing certain affirmations in order to become functioning members of the society in which we live.

 We were like-minded colleagues with an awesome working relationship, and a mutual respect for how we both viewed our population. We stayed late at school at times, always hoping to help our students with issues ranging from abusive relationships, homelessness, eating disorders, bullying, alcoholic or incarcerated parents, and the list goes on. Sometimes, I would simply join a student in his or her first session with the Doc, so that they would feel more comfortable until they could see how much help and peace Dr. Holeman could offer them. Beyond the walls of the school building, there was nothing, unless perhaps we had a brief exchange regarding one of our mutual students, or we ran into each other on a Friday night because we happen to reside in neighboring towns.

I trust and respect this guy so much, that I often referred colleagues to him when they had personal problems because he’s that good. One year around 2005 or 2006 (I can’t remember exactly, thanks to MS, but he probably knows), I went out on a medical leave due to an exacerbation of Multiple Sclerosis, and consequently missed the entire first half of the school year, from October until February. He checked on me frequently by email, and when I finally returned, he helped me work through my transition back to school. I can’t say that anyone else (except Bruce) was there for me during that difficult time, but Brett was.

We continued to work as a team in this manner until MS forced me out of work and I retired on disability in May of 2014. It was not how I expected my career would end, but sadly, MS is a progressive illness and I just was not able to perform my job the way it deserves to be done. No amount of compassion or love for my students could fix that for me.

 One day in the Spring of 2016, one of our shared former students (approaching 30 years old), reached out to me. She was about to be homeless and was desperate for support. Dr. Holeman and I both share the philosophy that if a former student, regardless of age, needs something that we are capable of assisting with, then we will. Because we believe in the wellness of our students in the grand scheme of life, not just the four years they spend with us in the confines of the school building. I spoke to the social worker at the MS Center where I am a patient, and I did some further research as well. Then, I reached out to Brett, who I had not spoken to since I retired, explaining the situation to him and sharing with him the research I had already done. I simply asked him if he could add to the list. He responded, immediately feeling the pang of sadness for this student, who we both adored. He told me he would check with a few other contacts he had and he would get back to me the following day. Which he did. Even though he didn’t have to. Especially since (unbeknownst to me), some egregious accusations had been launched against him, and he had been placed on administrative leave, pending investigation.

It was at that time that we reconnected in person. I can’t begin to express the depth of my complete and utter shock at the things that were being said about this man, whose only motive has ever been (or will ever be) the complete wellness of the population he serves: his students.

While my challenges are medical in nature, we both understand that these obstacles make us stronger, and we do not back down from them. Instead of explosive anger, he has used that emotion to push him forward in a positive direction with fitness and the art of natural physique body building. As with our like-mindedness relating to our students, we are also alike in this situation.  Although you won’t find me entering any fitness competitions, I use exercise, specifically yoga, as a positive outlet for my frustrations. He has persevered months of listening to his name and reputation being slandered, based on unsubstantiated hearsay while keeping his integrity in tact.

What I know for sure is that Dr. Brett Holeman is the best school psychologist you’ll ever find, and he has also been voted one of NJ’s top docs for kids. He is honest to a fault, and the only thing he has ever been guilty of is advocating too hard for a student in dire circumstances. What parent or guardian would be opposed to that?

I believe that the universe brought us together again at the exact moment when it did because I have been able to support him on this rocky part of his journey, while he supported me during the rocky road of breast cancer. Both of us have lost friends, or people who we considered friends, just because we were both faced with ginormous obstacles to overcome. It is at times of great adversity that people show their true colors, and we build up our strength (both physical and mental) to overcome the challenges placed before us. The two of us accept the fact that we are allowed to be afraid of the uncertainty before us, but we continue to forge ahead because we have faith that things are going to work out the way they are meant to.

 Ultimately, we are still working together as a team, and all of the former students that we are in contact with are still learning from us. No matter how old or young they are, they see us both persevering, and not ever considering giving up. The fact of the matter is that education extends far beyond the classroom and it doesn’t end at high school graduation.

For me and Brett, our lives have run oddly parallel to each other if you look at the big picture, and I could not be more grateful for his friendship or more proud of his perseverance. Just like our students, I’m still learning from him every single day.


Life does not always follow the plan you might have dreamed about, but our happiness depends on how we choose to address the difficult times. Thank you, Brett, for helping me remember this during my own trying times just by watching you. Your strength (not your muscles… although they aren’t bad either 😜) is an inspiration to me and I am lucky to call you one of my very best friends.

Fight on, brother. The truth will come out and I’ll be right there celebrating with you when it does. #TeamBrett

I made this sign to hold up at one of Brett’s recent fitness competitions. It was worth making despite the blue and gold glitter that I will be finding in the oddest of places until the day I move out of this house!

#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.

Celebration

This week Bruce and I are finally on a little getaway alone together, celebrating all the amazing things that we always celebrate in April: my birthday, his birthday, and our wedding anniversary. This year every celebration has had an extra note of euphoria with me having completed my treatment for breast cancer just three days before the start of all the usual festivities. This entry will be short and sweet because I’m enjoying every last bit of time we have together in this rare moment of complete and utter elation, feeling like we conquered the world (that sometimes feels like it’s working against us) yet again, and nothing can bring us down. Today the moral of the story is to enjoy every moment and live happily, because you never know what tomorrow will bring. Trust me…. this is something I’ve learned first-hand! See you next week!

We love taking road trips. There is always a “beginning of the trip” selfie!

There is so much about this picture that I love.

Walking around Burlington, Vermont in the rain is still making fun memories.

No comment necessary!

One of our favorite things to do when we travel is find as many local breweries as possible.

Cloudy and gloomy to some is gloriously beautiful to others.

I can’t always keep up with Bru and his beer, especially when he orders one with breakfast. I’ll stick with coffee!

This is how we roll on a road trip!

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!